Well, as you can probably guess from the title of this post, it’s not going to be a particularly uplifting one.

Sandy is not writing this – this is Laura, his (favourite) daughter. I can’t promise my writing style will be as nuanced and hilarious as my dad so bear with me…

My dad passed away last night at around 11pm. After having spent two days in a hospital bed that was installed in our house, he took a nosedive at midday, and we all knew that this was it. He died peacefully surrounded by his sisters and my mum, and wasn’t agitated or scared at all – which is really all any of us can ask for when our time comes.

This blog was very important to him. I think it was a way to make him feel connected to everyone who read it, and a way for him to still be Sandy rather than a cancer patient. It’s a wonderful testimony to his sheer stubbornness. I’d like to thank everyone who has read, liked, or commented on his blog, whether it’s been every post or just one or two. This network of support and outpouring of love has been crucial, not just for Dad but also for me and my mum, so thank you.

And with that, I’ll leave you. It’s a tough time and frankly just a bit shit but life is full of good times and bad times, and with my dad, the bad times were insignificant compared to a lifetime of good. I’ll share a quote that Dad always passed off as his own, but I recently discovered he pinched from John Lennon:

“It’ll all be okay in the end, and if it’s not okay, it’s not the end.”

Laura x

First of all, my apologies for the gap between this blog and the previous one. A number of issues have caused this which I’ll go through in random order. As some of you will be aware, the generic timescale following the decision to cease chemo looks to be in the region of four weeks, plus or minus two. Whilst this was kind of expected there is a huge mental variation between “a couple of weeks” and “six weeks or so”. I know the health care professionals can’t pin it down to a specific week/day/time but it is still frustrating to be in a state of limbo between a good day at the moment and Death knocking at the door. This whole estimating thing is based on averages and perhaps the most positive thing I can draw from it is that averages don’t really exist to give us fixed timescales, so we just have to take each day as it comes.

This has brought me to a phase of “final preparations” which essentially means that I have 24/7 helpline cover and will shortly be having a “hospital bed” installed at home. This bed will allow for the attachment of drips/supports etc should that become a necessary part of my day. I would stress that this comes under the term of “just in case” (it’s much easier to have the kit at the house beforehand than to request it in a rush some point down the line). I expect the bed to arrive sometime next week but with everything at the moment, it’s a bit of a lottery.

Another problem over the last week or so was my self destruction of my phone which has required a full factory reset and all the hassle of different apps/passwords etc etc. If I can draw you to two lessons from this entire escapade, 1) don’t get cancer 2) back up your electronic devices/passwords etc. One of these you probably have little control over, but the other you should think about doing NOW. Losing my phone at this point has lost me easy access to the blog (don’t know if this is good or bad for you), my email, Facebook, WhatsApp, the list goes on and on. Parts have been recovered and even those that are reinstalled don’t work the way they used to and refining the settings has been an utter nightmare. It will probably take me a week or so to get back to where I was. My own fault – I wish I’d backed up a couple of weeks’ ago.

Clinical stuff.

During this 2/3 week absence from the blog my mental position has varied enormously. After consultation with the local GPs and a lot of effort from the family team, we have established that the opiate quantity I take for pain relief for my upper and lower spine impacted on pain relief for my abdomen and abdominal spine area. Upping the dose to help my spine tipped my body systems into “distress mode” and this, in combination with adjusting my body hydration, which is a side effect of the opiates, was no simple task. Without boring you with details, this has meant trials of upping and lowering morning/evening dosages in the hope of finding a median point where we could control the worst of the symptoms and recover some level of mental control. At my worst, I was confused, disorientated and having various hallucinations. At my best, I would probably be seen “as no great difference” from normal. Initially, these swings could be rapid and dramatic with the confusion particularly worrying in the doctor’s eyes. However, after 2-3 weeks of “playing” with dosages and major tracking of my fluid intake, we seem to have turned a corner on this. At one stage, during the dosage tracking, I’m sure my GP thought I had a couple of days left and that would be it. Now, with the dosing more controlled, I have days where things are fine for significant periods. The other major factor in the health care dosing is rest. More than ever, I have to be wary of fatigue and the massive impact this has on my concentration and ability to string sentences together. Thankfully, both Nicola and Laura are quick to spot the start of this and “politely” suggest that I might want to take a break. Occasionally, I will even suggest it myself. On days where the opiate dosage is correct, the hydration levels are up and I have rested, I feel almost normal. The challenge is to juggle these factors in order to try and retain as much normality as possible. Whilst we are still talking about 2-4 weeks, it make sense to have these as comfortable as possible.

Other stuff.

A big plus at the moment is that Laura will be at home for the next few weeks which has given us time to “catch up” and enjoy (?) each other’s company. Whilst this increases the stress of shower access management, this stress is far overshadowed by the additional pair of hands and eyes, especially when looking after my drug intake. She has also been very useful at the resurrection of my phone and its apps – I reckon we’re about 50% reinstalled. She also not only suggests meals that could be made but also makes them as well, thus spreading the load of my instantly variable tastebuds which still carry on in a world of their own.

Another of the key roles where Laura will play a major part is the planning of my funeral ceremony. On the one side, it is good to be in a position to help influence the form of the ceremony without the negative of having to be there on the day and get through it. It is still quite early in formulation but between the three of us we should have it sorted to a position that we are all happy with the proposed elements and the remaining team can work with the other players in a funeral service to make this an easier chore. No firm decisions yet but I expect the enjoyment I have had running around the estate in Falkland will come into it in some manner. More information will be “announced” as appropriate.

Once again, apologies for any distress my disappearance may have caused. What can I say except, back your bloody phones up now!!

Not really wanting to dwell on my medical situation, but thought I’d add a little bit more background to my brief time working in Ireland (or Norn Ireland, as the locals called it…). This was in 1988, a point where the “Troubles” were less “car bomb” and “riot” focused (and so were less reported on the TV or in newspapers in GB). Anything I saw of the Troubles was the aftermath (burnt out cars or buses) and this wasn’t too frequent. There were, definitely, known sectarian boundaries and I was well-warned by my colleagues over there that these existed and should be respected.

After staying in a hotel for the first couple of weeks, I was on the lookout for cheaper digs – I could claim a living allowance so the cheaper I could find my own accommodation, the more cash I could pocket. One of the electricians at the site told me that his aunt had a spare room for rent, and his cousin also lived there. The cousin was a few years older than me, but from all accounts was a great guy and he would be good company for me too. The house was a mid-terrace council house in one of the (very Protestant) housing schemes in Carrickfergus. The kerbstones were painted red, white and blue, as were the lines down the middle of the road. The room was big and comfortable, the price was very low (and included breakfast and an evening meal) and it was about 20 minutes walk to work. All in all it was practically ideal…other than the consideration that Vera and her son Gregory were Catholic. I didn’t really give this much thought and took the room.

Over the next few days it became very apparent that Vera and Gregory were very popular in the community and had not experienced much in the way of sectarian hassle at all. Gregory’s contact list was impressive and he was keen to include me in any social activities he was involved in. (Vera did a bit of “networking” on my behalf as well, but this was almost always directed at trying to find me a “nice Irish girl” that I could “settle down with”.)

It was one of Gregory’s “social invites” that almost got me into trouble one night in Carrickfergus…

It started innocuously enough – Gregory had pulled some strings and got the pair of us access to the Celtic social club, to watch the weekend’s Scottish Cup final – Celtic vs Dundee United. I wasn’t really bothered about it, but as he’d put so much effort into setting it up, it would have been churlish to refuse to go. The match was only available on satellite TV and in those days, these were still pretty rare – only a few of the large pubs or social clubs had them.

We arrived early and had a (subsidised) Guiness at the main bar before heading to the packed TV lounge. During the (seemingly interminable) “build up”, someone shouted “are there any United fans in”. About 3 voices (including mine) shouted “yes” and were immediately drowned out by the banter and laughter from the other viewers.

About 15 minutes in the match Dundee United scored, and I cheered. I was the only one who cheered and I realised that this had annoyed some of the audience. A couple of minutes later, some guys spoke to Gregory and he, in turn, came to speak to me. Essentially I was asked by the committee to leave the TV lounge, and go to the bar instead. I stood up, apologised to the room and left.

I hadn’t even finished my first beer when there was an enormous cheer from the lounge – Celtic had equalised! The lounge door opened and I was invited to re-join the TV audience. Celtic went on to win (2 – 1) and I don’t think either Gregory or myself had to buy another drink all night, such was the generosity of the victorious fans.

Relatively innocuous as this was, there were repercussions to follow…

About 3 weeks later, Gregory announced that we were going to a music event at the Orange Lodge on the next Saturday evening. The entertainment was to be provided by some chap I’d never heard of, who (according to Gregory) was well known locally as a mediocre singer. When I asked “why?” he explained that there had been some comments about us spending money at the Celtic club, but we had not matched this at the Orange Lodge. This may sound petty but it was the balancing of actions and activities that was required to maintain harmony. Not wanting to leave Gregory in a tight spot, I agreed to go. Gregory arranged for some of his other friends to join us and it was actually an enjoyable evening (despite the singer’s best efforts).

We’d all had a fair amount to drink and when the singer had finished, the main lights came on and the audience sang the National Anthem.

I think this nod of respect to the Queen should have marked the end of the evening, but some of our little group were a bit noisy (drunk!) – much to the annoyance of the two old men at the adjacent table, immediately on my right. One of them grabbed his walking stick and rapped on table for quiet. Once the room was silent, the guy with the stick (standing next-but-one to me) called out “a toast” and raised his glass. We all struggled with the empties on our table and just managed to have a drink in hand as he said “The Queen”

“The Queen” we all echoed, and took a drink.

At this point, the second man (standing on my right) raised his glass – “The Union”

“The Union” we all echoed, and took a drink.

I suddenly became very aware that they were both now staring at me…

Panicking, I looked straight ahead…and saw a faded banner along the top of the opposite wall which read “The Queen, The Union, God and Ulster”

Inspired (and slightly drunk) I raised my glass and said “God and Ulster” – this was echoed by the room, we had a swig of beer and got out as quickly as possible…

Gregory found the whole thing hilarious – he assured me that someone else would have stepped in if I was stuck (not him of course, he didn’t have a clue either). I had visions of the old boys beating me up with their walking sticks throwing me out…all because I’d gone to watch a football match that I wasn’t very interested in.

Just a brief update on the oncologist review this morning…

It appears that the current chemo has done nothing to stem the liver cancer, and I also now have further spots in my lungs. In view of this, the chemo has been stopped and I am to stop taking most of the drugs (including the self-injecting) immediately. I will have another review with the oncologist in about 4 weeks where he will be able to assess how much of my fatigue and appetite suppression is chemo-based and how much is cancer-based. (His current opinion is that it is likely that the advanced nature of the cancer is the major culprit.)

At this point it looks unlikely that I will commence any new pharmaceutical treatment so it will be a case of seeing how quickly my liver deteriorates. He will have a better idea on this at my clinical review in 4 weeks.

Not really what I wanted to hear, but not entirely unexpected either.

At the moment we will continue enjoying each day as it comes, much as we have done since May last year.

It’s about 22:30 on Wednesday night, the rest of the team are in bed and I am trying not to think about the meeting with the oncologist tomorrow. For some reason, this one is hanging over me like a dark depression cloud, however it will be over (whatever the outcome) in 12 hours or so.

Anyway, I have been asked add a little more in the way “background” on my past history…this isn’t a topic I am very keen on, but there are a couple of events that stand out and may give some entertainment. The tale I am going to relate sounds VERY far-fetched but in the process of converting some old 35mm photo slides to scanned images, I came across a couple which will (in part) corroborate some of the more “bizarre” elements.

So to my tale…(note, names have been changed and faces obscured to protect those involved – I am sure you will understand if you read to the end).

In 1985 I was working at a power station conversion at Kilroot Power Station in Carrickfergus, just North of Belfast.

I frequented a couple of pubs, but one of my favourites was one run by a Scotsman (who had been involved in the original construction of the power station. I was sitting at the bar one evening when a guy sitting a couple of seats away introduced himself (by name) and added the comment “I’m the driver of the Enterprise”. I responded that I thought that it was Captain Kirk who did that – he laughed and explained that the Enterprise was the Belfast to Dublin express train. After a few more beers, he was surprised that I hadn’t yet visited Dublin. This somehow developed into a plan that I would head down to Dublin in a couple of weekends time. He would be driving the first train that day, but we were to meet in the station bar in Dublin at 6pm (I think), to have a beer before he took the 7pm express back up to Belfast. Additionally, I didn’t need to buy a ticket, he would tell the guys at Belfast that I was “with him”. This seemed a step too far, even by drunk train driver standards, but that was the arrangement.

On the appointed day, I headed into Belfast early enough to exchange some pounds for punts, and early enough to buy a ticket (should the drunken plan be pie in the sky). In those days, rail travellers queued at a gated barrier where their tickets were checked before they were allowed on to the platform. As I was early, there was no queue but there was a railwayman standing at the gate. I walked up to him and said that (my chum from the pub) had said to come to the gate. Immediately he opened the gate and directed me to the dining carriage of the waiting express. The crew were in there and offered me a breakfast. I went for a bacon soda (a soda is an Irish bread roll) and then was shown to an empty 1st class compartment. Apart from a border passport check (and a stop at a very grim-looking holiday camp) the progress to Dublin was smooth and easy.

My day in Dublin would be a blog by itself, (and all in all less interesting than my journey home), so I will skip to the return leg. The one thing that happened during the day was that my camera developed a fault. To fix it I had to strip out the film in daylight, losing all the photos I had taken – on the train and wandering around Dublin. It did work for most of the return journey though.

I met my chum at the bar and after a swift drink, we headed through the barrier. He suggested that I sit in the cab with him, and this seemed like a god idea (I had been drinking – he could have suggested that I sit on the roof and I would have agreed with him…).

We had been travelling for half an hour or so when he turned to me and said “have you ever driven a train?” “Nope” I replied. “It’s dead easy…sit here, keep your feet on this safety plate” (emergency braking known as the “dead man’s handle”, apparently – activates if a driver collapses and the pressure is taken off). So I did…and for a few miles, I was an engine driver. My chum managed to take a couple of photos, but didn’t take any of me (or if he did, they never came out – the young folk won’t understand the restrictions of only having 36 photos on a reel, and no chance to see them for a week or so after taking them)

Whilst the trip so far had been surprising to say the least, what happened when we returned to Belfast was the icing on the cake…

When we got back, my buddy was asked to stay back for a while. The rail service ran a tourist steam train and it had suffered a very minor derailment. He had the permit to drive a steam train so they hoped he could stay for a while in case they got it ready to be driven back in the next couple of hours. We went to his “office” – a pub beside the station. This had a steel door and security lights with cameras. Once through the outer door we were then re-checked by camera in a tiny vestibule and the inner door opened to reveal a very ordinary looking pub. This was the railway workers preferred watering hole. A few drinks/couple of hours later and he got a call to say that he could clock off as the train wasn’t going to be fit to drive for a while yet.

Outside it was now dark, the trains and buses were no longer running and we still had to get the 12 miles up to Carrickfergus and home. “One of the lads will give us a lift” my chum said confidently as we walked/staggered back to the station. This was good news as it was now raining and there were few taxis about. He was quite correct too. After a brief chat with a couple of the guys at the station, someone “drove” us to Carrick – with the three of us squeezed into the cab of a two-carriage suburban train. We were deposited at the station at Carrick and the wee train returned to Belfast. My buddy and I went our separate ways home from the station, and I have the image of him staggering up the road in the rain.

I left that job shortly after this and didn’t see him again. I’d thought about sending the photos to him, but over various moves etc, these were lost until the recent tidying up exercises.

Well that has killed a couple of hours, but it has also reminded me of another couple of tales from when I worked over there…maybe next time…

Hi there, and may I wish those who are still following my ramblings a very happy 2022.

I have never really been one for setting resolutions for the year ahead (probably because I am particularly rubbish at sticking to them…)

In the latter years this lack of sticking power has been addressed by me picking a specific running event and thereby having to follow a relatively structured training plan to achieve the required results. These always tended to be more focused on completion of an event without injury, rather than any prospect of being well-placed in my age category. With Covid over the last couple of years (and the cancer more recently) my “big plans” were wiped out. 2019 should have seen me try to complete an event called the “Highland Fling” (a 50-ish mile run taking in the top half of the West Highland Way) and 2020 was to be a mountainous half marathon-ish in the south of France. Covid effectively scuppered these aspirations…and cancer has buggered any chance of a re-match this year…or next.

With the absence of a big race to train for (and with no idea what lies ahead) I will not have the structure I normally have to give me any form of focus. I can concentrate on “getting better” (within the constraints of my illness) but other than a rather generic resolution to “keep going beyond the expectations of the oncology team” it will be a case of simply muddling on.

Had I been able to do the Fling and the French race, I was looking to cut back on the running a bit and maybe have a go at a small triathlon. This is also now out of my current reach – just as well as I cannot swim to save myself.

Another aspiration was to do a bit more exploring Scotland on foot and by bike, with a degree of wild camping chucked in. These are probably (borderline) cancelled as well, but the e-bike may allow a couple of day expeditions, depending on how things progress. A couple of trips away on the motorbike were also being formulated…

One of the “resolutions” that Nicola and I shared was a desire to meet up with friends more often. Covid has absolutely wiped this out but (depending on what the next few weeks have in store) we may try to improve on this. In all honesty, I often don’t feel like seeing anyone but my (immediate) family and it is difficult to predict how I will feel as any planned meeting approaches, so please don’t take offence if I don’t rush to visit…my peculiar tastebuds and bizarre appetite would make me the house guest from Hell anyway.

In terms of a health update, I have been feeling good over the last few days and have managed a short walk through the village over the last few days. My appetite has been variable but I have generally been eating well. My weight is staying stubbornly low and static, which may impact the chemo plan for next week. I have also experienced a feeling of nausea occasionally over the last couple of days – this is very unusual compared to my “pre-cancer” self, but it has been apparent from time to time over the last few weeks. Other than that, any ailments I have are related to either age or general over-indulgence (I can’t blame the cancer for everything…)

That’s about all I have to say at the moment; I have had a fantastic Christmas with my family and it was really great to see in 2022 as a VERY small group – normally, it is just me watching Jools by myself and it was most welcome to have the company I had this hogmanay.

Best wishes to you all for this year (and beyond) – next update will most likely be after the meeting/treatment on Thursday.

Whilst I was planning on doing a bit of a review post on Hogmanay or Ne’erday, I thought I’d give a quick snapshot of how my Christmas went…

We had already decided that this year would be very low key, with Nicola and I simply having a Christmas stocking to unpack in the morning (and actually, Laura had a more restrained Christmas than usual too). For obvious reasons, I didn’t really want anything but consumables – I have a lot of de-cluttering to get on with in 2022…)

Christmas morning was a lovely, quiet family time – a few tears (I am becoming quite the softie as time rolls on) but lots of laughs too. Unfortunately, the timing was such that I was at the “low point” post-chemo, so my appetite and tastebuds meant that the food was wasted on me. It was, however, a really enjoyable day and a good time was had by all.

Since then, I have been feeling a little better day by day and I am definitely on the “upward trajectory” that should see me in good form, just in time for the chemo next week…

As was the case with the previous treatment schedule I am now finding myself low on weight and needing to add about half a stone before Thursday. I am trying to eat more and am snacking away as much as I can, but it is proving to be a bit of a challenge. Due to the local GP surgery being closed on Tuesday next week I will be giving my pre-chemo blood samples at the Queen Margaret hospital in Dunfermline. I will ask the nurses to check my weight at the same time to see if I have closed the gap enough.

I also have a review meeting with the oncologist on the Thursday – he may pull the plug on any further treatment if he sees fit, so it may not be an issue. I am a little more nervous than usual about the next review and am trying very hard to eliminate it from my thoughts until I am sitting there. With the pattern of good days and bad days I am now used to from the chemo, it is very difficult to tell if there has been any significant change internally. All will be revealed on Thursday so I will pack it away until then.

With the rise of Omicron and the fact that I won’t be able to get my 4th vaccine (this is the “booster if you are immunocompromised) for around 10 weeks, we have not been particularly sociable over the holidays. With the general fatigue that I am feeling, this is probably no bad thing. There are some people we are keen to catch up with but it would be a pain to postpone my treatment because I picked up Covid. Frustrating, but this is the situation we are in. If they decide to continue with the treatment it will be another 10 weeks or so before I can start to recover from the chemo. By that time, who knows what the Covid situation will be?

Anyway, that’s how my Christmas went and how the next week or so is looking. I may give you an update on my New Year resolutions, but I think that could be a VERY short post…

Yes, my morning routine was interrupted today as I had an appointment for a CT scan at 09:45. I would be the first to agree that this is a fairly straightforward process and the only issue I tend to have is the need to have no food in the two hours prior to the scan, and the consumption of a litre of water in the hour immediately before the scan – with no opportunity to to “lose” any of this fluid. Any losses require to be “topped up” which adds yet more time into the equation. You may also recall that this fluid retention effort has been robustly tested as I have suffered from a degree of paralysis in the lower spine which reduced both the feeling and level of control in the bladder/bowel area.

Deep joy.

Being aware of this is a double-edged sword…on the one hand, I can mentally prepare and apply a lot of focus and “mind control” to the situation; on the other hand, I can have lots of time to worry about it in advance. The peak of the problem occurs halfway through the scan when I am given an injection which will give me a warming sensation – which makes me feel as if I have had a release from the bladder…. They tell me that it’s never been an issue for anyone (but if pressed, they are not quite so sure if that is 100% accurate…) Anyway, I have managed a couple of these previously and whilst one in particular was close to disaster, I have been OK.

This morning, Nicola kindly agreed to drop me at the door of the Vic so that I didn’t have to spend valuable time finding a parking space and walking to the hospital. This reduced the stress level automatically. Additionally, the check in at the ward was very quick, and I was seen almost immediately. I lay on the scanner platform and was quickly fitted with a cannula.

All set, scan 1 (no injection) was done, there was a short pause then scan 2 (with the injection) started. This too was over quickly so all that remained was to sit for 10 minutes while they prepped the next patient, then it was cannula out, a bit of gauze taped over the puncture and I was free to go.

First things first – off to the toilet for a “controlled” release. It does appear that the degree of paralysis has reduced and consequently the degree of control is increasing… This is further welcome news.

The results of the scan will be reviewed with the oncology team on the 6th of January, so I can forget all about them for the moment.

Rather than rush off home straight from the scan I had arranged to speak to one of the hospital chaplains at the Maggie’s Centre on the site. We have corresponded by email and had agreed to meet. Those who know me will be well aware that I would not describe myself as a “religious” person in the slightest but (just as he came across in the email chats) Ian was not pushing any particular agenda. He will provide a bit of a sounding board for me going forward, as well as a source of practical support as someone who is not new to the circumstances I find myself in. Don’t get me wrong, Nicola, Laura and I speak, but I think it could be useful have someone external to my family and friends to provide some additional support (without me becoming a burden on family and friends). Some of the time I don’t have a clue how to articulate/navigate parts of this path that I am on, so I am happy to see what may be possible with more experienced support. Besides, he is a runner so that’s usually a good starting point…

One pleasant chat later and Nicola arrived to get me back home, where I rested for the remainder of the day. If the phasing of this third round of chemo follows the previous two, I will probably feel pretty good for the next couple of days, then have a bit of a dip come Thursday. This will probably last 3 or 4 days then I should be heading back “up” and feel pretty good until the next chemo session (which is on the 6th of January, along with the oncologist meeting). Other than 3 blood tests between now and then, I am “on holiday” from clinics and wards (if all goes to plan…)

If I don’t add another blog until the next treatment etc, I wish you all a very Happy Christmas and hope for a great New Year for all…

It’s very warm, Radio Forth is blasting out at top volume and I am surrounded by busy young ladies in uniform…yes, chemo has commenced! This is the third out of a planned six sessions (hence my obvious and poor blog title…)

This has been a bit of a relief as it means that my bloods and weight are both acceptable. Bizarrely, my resting heart rate was over 100 – my “old” resting heart rate (pre-cancer) was around 48, so this degree of change I find a little unsettling. The nursing team reviewed this and decided that we could proceed. It is always warm in the ward, but today it is particularly stuffy as well. I have convinced myself that this is the root cause of the high rate (along with the ongoing body reaction to the invading cancer and chemo drugs). Actually, I suspect my heart rate rises as soon as I enter a hospital or surgery, but I have no way of proving it… a touch of nosocomephobia perhaps? Anyway, I am in, settled, connected and taking on a dose of Irinotecan (and associated flushing agents etc.) Having arrived at around 13:30 I should be ready to head home by 16:30.

The plan, once I get home, is to rest a lot. This round of chemo has been tougher on my body than the previous regime and I think more rest/sleep will help with the recovery.

So on that note (and as it is getting closer to lousin’ time), I will sign off for now…

A number of things have been happening since the last update, so I thought I’d meander through them (in whatever order they happen to tumble out of my mind…)

Physically, I have generally been feeling better and better as each day passes. This is counterbalanced slightly in that I have also been feeling more fatigue as the days pass as well. This has possibly been triggered by my doing less and resting more. I did have a short walk on Saturday (and actually woke up with slightly aching legs this morning. I think this could be a cycle that I need to break quickly. It has been too easy to reject a suggestion to go for a walk and simply rest more instead. Whilst a snooze is currently always welcome, I feel that the lack of any form of physical activity has affected my (already poor) muscle mass and is putting me on a path of decline. I can start to address this by getting out for a walk every day, gradually building up my distance/stamina. In parallel with this (and probably directly related), my weight has been dropping. Initially, this was from my current usual weight of around 10.5st down to a fraction below 10st. It then continued to to drop to around 9.5st, despite me eating 3 reasonable meals a day, and nibbling on tablet and chocolate biscuits in between.

Weight loss is a concern as the oncologist may decide to delay the next chemo session until the trend is reversed. The actual numbers are small, but this trend reversal has been evident in the last two days.

Strangely, I have also experienced a loss of appetite over the last week or so. This didn’t really affect my intake but, when combined with the strange behaviour of my tastebuds, it has made eating a little bit of a chore. Hopefully this will pass shortly as well.

Other than that, bowels and bladder have been well behaved and the degree of “disruption” was vastly reduced after the previous chemo session – the reduced dose seems to have helped this enormously.

Whilst I still get a bit of a surprise seeing my shaved head in the mirror, I am getting more used to it. The process of shaving it is straightforward and I do this every second day. I am not happy with the feel/effect of using my standard E45 moisturiser on it so decided to spoil myself and purchase a more specialised product. After much research the order was placed and it arrived today. I will try it for a few days and report back on whether or not it has been £4 well spent…

Mentally, I have been pretty much OK of late. I did have a major “down” point last week (Santa paper chain) but have had no such “triggers” since then. I met up with my sister and brother-in-law early in the week, and also had a visit from a university friend, John. It was great to see him, particularly as the last time we saw each other was at the start of my first chemo (I think) and apparently I was looking really shit at that point. I am looking much better now (according to John).

Other things that have helped to keep me (relatively) cheerful include – sorting out lots of the mortgage/endowment/pension paperwork – this is pretty much complete, I just don’t want it to be required for some time yet… Verstappen taking the F1 title (pending any more sour grapes from Mercedes) Christmas shopping has started (far away from my “Christmas Eve dash” version, but that’s probably a good thing…) I had my third Covid vaccination today – booster to follow in 12 weeks and that will be me fully dosed. I also had my flu jab at the same time, so am as ready as I can be for winter.

So, all in all, I should be starting the week on a positive footing.

It’s 11 days since I had the second round of treatment from the current chemo regime, so I thought I’d give a little update on my current status…

With the first round of this cycle I experienced 4 days of constant diarrhoea, a day in hospital on a drip then 4 days utterly bunged up. With the reduced concentration of the infusion, this second round had to be better, surely?

I am happy to report that this cycle has indeed been an improvement. Whilst still experiencing some of the symptoms of the first cycle (such as stomach cramps, very short notice of bowel activity, little or no flow control) these were quickly brought under control with some of the drugs in my arsenal (no, that’s not a pun…I have been given a range of drugs to use if circumstances require – these did practically nothing last time…). This meant that, although my body was signalling “diarrhoea” the reality was that things were not too far away from normal. This made the situation more comfortable and easier to manage. It also eliminated the dehydration (and potential hospital visit) and any recurrence of being “bunged up”. Compared to the first cycle this was a welcome difference.

The only other physical impact comparing the two cycles is the tiredness. I am still very tired and rest a lot of the time. My feeling is that I am resting more than last time, but it’s hard to tell. I gave a blood sample last week but have not been given the results. (I am due to give another one tomorrow morning as well.) These two samples are specifically for a platelet count, next week I will be checked again to see if my blood is “fit” for the chemo.

Feeling tired and not having any indication of of my blood condition starts the little worms of concern rattling through my thoughts… Tiredness could be low iron – I do 5 days of injections post-chemo to help my blood recover from the battering of the treatment. When I was very low previously I was given a couple of transfusions to get me ready for the very first chemo. This (along with other fluids by drip) kept me in hospital for a couple of nights – I can do without that.

A bigger concern (but with even less substance than my low iron worry) is that something is affecting my blood quality and that it is likely to be the liver cancer making itself more evident.

I should get a call from the chemo team this week and I am sure they will have some facts for me to consider, rather than half-arsed theories.

The only other physical aspect that I can think of is the back pain I was feeling a couple of weeks ago. Just as I was preparing to discuss this with my GP, the pain vanished. It has not reappeared, so I will forget about it. Nice to tick one of my queries off the list…

That’s my physical status – the mental picture is a little less straightforward. Generally, I have been doing OK mentally. I have the occasional downward dip, but recovery is swift and the depth isn’t that great.

The side effects from round one did, at times, make me question whether I could continue with the treatment to the end. Stopping chemo is an option that is available to me at any time and I feel no pressure either way (from Nicola or the chemo team). I decide if the treatment is to go ahead every 3 weeks – the chemo team can advise/postpone if medically appropriate. It would not have been sensible to take a big decision like that based on the first cycle alone, however tempting it may look at a time of stress. As I sit here now, I am sure that carrying on is the correct decision. However, the first round was tough, so I was mentally bracing myself as the side effects from round 2 approached.

This gave me lots of random (and generally unwanted) negative thoughts in my head as the time drew closer.

Add into the mix that it is my birthday tomorrow. I am not someone who likes a fuss at the best of times and it is fair to say that I am utterly ambivalent regarding tomorrow in any case. Given that I have been trying to “downsize” the amount of things I have here (lots still to be done) – the last thing I need is more “stuff”. There is, of course, the notion that this will probably be the last one – (happy to be proved wrong in 12 months…) – this brought more mental clutter into the mix.

Then there is Christmas. I don’t think I have ever felt less Christmassy in my life. In fact, if asked a few days ago I would have said ‘no tree, no decorations, no Christmas at all” – such was my negativity after round one. I don’t think Nicola is too bothered about Christmas either, as she has an increased workload as I get more fatigued.

These waves of negativity hit me hard yesterday morning. It was triggered by the most innocuous thought and left me a sobbing wreck. When Laura was very young, she and I made a paper chain of snowmen (you know the sort of thing, folded zig-zag paper and when you cut out a shape, you end up with a little chain of them). Once we’d done that, we drew faces etc on them. Each was different – all simple stuff, but we did it years ago and it (with added sellotape over the years) is always placed on the Christmas tree.

Well for some reason this came into my mind and the floodgates opened. This lasted beyond my shower and I had to lie down on the bed to let it all out. Laura came to see if I was alright and that set me off even more. It got to a ridiculous point where I could barely explain what had happened, and couldn’t explain why this paper chain had tipped me over the edge.

Of course I recovered (eventually) and decided that Laura and I would get a tree this week and we will decorate the house, just to a lesser extent.

So mentally, I think I have passed the worst of the recent period – God knows what will happen when I dig out the decorations and see these bloody snowmen…

Thursday morning.

4 weeks ago, I had the first round of my new chemo regime.

3 weeks ago, the diarrhoea “side effect” started…and it ran for 4 days solid (puns only marginally intended).

This timeline has been at the forefront of my thoughts as I approach the “one week after treatment” point again and have been mentally bracing myself for a repeat performance (with the subsequent 7 or 8 days of inconvenience).

I am therefore happy to report that, so far, the side effects do appear to be less significant this time round. It is too early to declare a definitive “victory” as things can change instantly in this circus, but tentatively, so far, so good. I don’t particularly want to share lots of details, but compared to 3 weeks ago, I have experienced no bleeding, fewer instances of “get to the toilet NOW!!” and I am spending more time outside the toilet than inside. I am also feeling better today than I was 3 weeks ago, but am definitely going through a period where side effects lurk awaiting the chance to knock me back a bit.

This apparent reduction in the side effects is a mental plus. It comes at a good time as I hit a “low” yesterday, which took a little time to shake off.

As I was finding more tufts of hair departing, I decided that yesterday was the day to shave my head and rid myself of the hassle of patchy hair loss. Laura helped me by performing the first close trim with the clippers, then I “polished off” the job with an electric razor. This all went very well and within 15 minutes the job was done.

This left me with very mixed emotions. I was shocked when I caught sight of my reflection afterwards – this has lessened slightly this morning, but to a degree is still there.

More significant than my appearance is the psychological “hit”. Although the decision to take my hair off was mine, there is a nagging feeling that this is the first time that the cancer has “taken the upper hand”, in a boxing analogy, it’s as if “cancer” has taken a round on points. This is illogical, but the thought was hard to shift. Perhaps it’s because I now look like I may be suffering from cancer, whereas previously I looked pretty healthy. Regardless, I am picking up (mentally) as the day progresses, and I am sure I will soon get used to my new look. The time it saves in my shower routine is very welcome – gotta grab a positive where I can…

It’s 5 days since my last chemo session and so far, all is going well. Admittedly, it was around the 7-day point where I experienced the full “wheels coming off” hammering last time, but at this point I wasn’t feeling 100%, so I will take the current status quite happily.

Throughout the whole treatment process from the beginning I have been very lucky with the relatively minor side effects that have been chucked my way – far luckier than I had any right to hope for. This run of good fortune (if you ignore the over-arching reason that I am writing this blog in the first place) seems to be continuing. I am sleeping well (the “new” back pain that arose a couple of weeks ago has diminished to be almost unnoticeable) and I am eating well. My weight is slowly creeping up from the losses due to the prolonged diarrhoea the other week. One of the other minor changes that pops along is the variability of my tastebuds. Way back, I was really enjoying salt and vinegar crisps – now I can’t look at them. These taste swings can be sudden – I have relished my post-porridge toast with butter and marmalade at breakfast time for weeks. A few days ago I had to abandon a slice after two bites as I didn’t like the taste. Strange.

I have been fortunate to avoid mouth ulcers, as these could make every meal miserable and would certainly affect any weight gain plans.

As with most spells of good luck, it has to run out at some point, and I think I am shortly going to hit one of the more common side effects, literally “head on”. Hair loss…

I noticed that shaving was taking less time than usual so the growth rate was reduced. It therefore followed that my flowing locks would also affected by a slow re-growth rate. In fact, I began to notice that rinsing my head after washing my hair was increasingly leaving me with irritating little clumps of hair that were hard to rinse away. No major bald patches, but definitely thinning dramatically all over. Never having been blessed with movie-star looks, my hair has always tended to be generally ignored. I get it cut when the length annoys me and I leave it to the hairdresser to make as good a job as possible with the limited resources at their disposal. I do notice more hair on my pillow than previously, and also around the collar of my t-shirt or jersey, but not mounds of the stuff. However, it takes very little additional hair getting trapped between my fingers or sticking to my towel after a shower to irritate me. Add in the need to empty the hair trap in the shower every couple of days (instead of a couple of weeks) and enough is enough. At some point this week I will eliminate the problem and get back to a more pleasant showering and towelling experience. Chilly time of year to be experimenting with this, but the faff level in the morning will soon be untenable.

I have no idea if I have a head shape that will suit being bald, but I have a range of headwear at my disposal to keep my napper warm and possibly even disguise the hair removal if I find the end result to be severely sub-optimal. I am sure that I will receive honest feedback and opinions from the team here at home and they will deliver this in an appropriate and sensitive manner (aye, right!!).

If you are local, you may well see me sporting a rather natty bandana as I swagger through the streets of Falkland, channelling my inner Johnny Depp/Captain Jack Sparrow. If you see me walking around with a full-face crash helmet on, just don’t ask where my motorbike is…

Hi. Just a brief note regarding the aftermath of my last treatment and an additional morsel, hopefully to add a little entertainment into proceedings.

There’s actually not much at all to report following Thursday’s chemo. I have been feeling fairly good since I came home on Thursday evening. I am still eating well – sleep has been slightly disturbed by some hot flushes (which is similar to the last time), but these are already reducing. The back pain around the bottom of my shoulder blades is more of an irritant and wakes me if I end up lying in a position that doesn’t suit it. It hasn’t responded to opiates, paracetamol or ibuprofen so far, but I will speak to my GP and see if he has any other options. I did try Tramadol with my initial back pains some months ago, but it had no effect whatsoever. If it still aches in three weeks (and my other side effects are better controlled this time round) I may elect to take another round of radiography. this would be inconvenient so close to Christmas, but I do need my beauty sleep. I have spent a lot more time resting after the latest treatment but feel the need to have a short walk soon. Probably best to do this before/in case I start playing “bowel roulette” again…

Additional feature!

A few people have suggested that I expand my blog to include some stories from my past. Whilst not 100% sold on how much this would be welcomed, I have written a report on a running weekend that I had in April 2017 to “test the water”. I certainly won’t be offended by negative feedback, just writing it and recalling the events has been a bit of fun. Depending on how it goes, I will add some other (shorter!) anecdotes in the future.

The blog is primarily a means of keeping people up to date with my condition and I don’t want to compromise that in any way…

Ossian Adventure – a running story

(The word adventure has gotten overused. For me, when everything goes wrong – that’s when adventure starts. – Yvon Chouinard)

The idea…

I don’t remember exactly when the idea started to form, but the trigger was a photograph of a lochside Youth Hostel in Scotland.

 For some reason this image resonated with me and I started to look at the potential for a running weekend – hoping that some of my more adventurous running chums would ignore the composting toilets, poor phone signal and shared dormitory accommodation, for the sake of a couple of interesting runs, off the beaten track.

It’s hard to define what makes for a memorable run. In my (limited) experience it can be as simple as everything “just feels right” so that the effort is easy and you can enjoy the surroundings and the flow of the run. It can also be overcoming some obstacles to experience a new route or favoured end-point from a new direction. These “obstacles” can be geographical (a rocky scramble or river crossing perhaps) or physical (further/faster than previously executed) – it can also be practically any run if accompanied by the right people, where the chat and shared experience of the views and challenges creates a bond.

As I started to look at the options for Ossian, there were some early indicators that it had the makings of a memorable weekend. The hostel can only be reached by foot, bike or rail. The railway station is Corrour Station, one of the most remote in the UK. It was used as the backdrop for one of the scenes in the film “Trainspotting” and its’ location on the West Highland Line is around 10 miles from the nearest public road. The hostel is a 20-minute walk from the station so our trip would start with a train journey followed by a hike, carrying all of our food and running gear. It would definitely feel different to the way most running trips kick off. This sounded like an idea I could “sell” to a few of my running friends, all I had to do was work out a couple of decent runs using the hostel as a base, and I was confident that I could have company for the weekend – OK, I probably wouldn’t be operating a ballot for places, but there were enough long-distance runners in the club who might just find this appealing.

Route finding around Loch Ossian was a little more challenging…

There was an obvious 7-mile track around the loch. Sure, it was a relatively smooth surface and presented no navigational issues. It was also possibly a tad short for the calibre of the chums I’d hope to attract, but it would make a nice little leg stretcher after the train journey, and a scenic precursor to an evening of wine and chat before the main event…I just needed to work out what this would be…

The area under consideration was large, but practicalities of transport limited it to the western side, between Fort William and Corrour –

The potential for using the train to get to a start point and allowing us to “run home” was far more attractive than a straightforward “out and back” route. This gave me Spean Bridge and Fort William as likely starting points. The maps showed an old drover’s route called the Lairig Leacach which runs from Spean Bridge and would get us to the southern end of Loch Treig. From there it would be a short run along a well surfaced track all the way to the hostel. I decided that this represented the best option, if the train times could work.

The plan…

Those who know me well, or have worked with me will be well aware that “planning ahead” and “me” are pretty much complete strangers. I generally work with an idea in principle and keep going until it has either been achieved or has been modified into what should have been the idea in the first place (if I had taken enough time to assess and consider options properly).

The more I researched the Lairig Leacach, the more it became apparent that the remotest part of the route had very little detail recorded online. In fact, this section was particularly vague in almost every account of the route I read. This was due in part to there being only a handful of accounts available and in part to the bulk of these were actually mountain bike trips, so avoided this (largely trackless) section. It was also apparent that this area was susceptible to flooding, which submerged any notional tracks. As part of the planning, I used the Ordnance Survey online mapping site. This gives access to aerial photographs of the whole of the UK so I was able to zoom in and practically survey the route from start to finish. It was evident that the first half of the route was on an obvious track – this actually heads west (just after the Lairig Leacach bothy) and eventually reaches close to Fort William. The routes from Fort William to the bothy and from Spean Bridge to the bothy are both well-documented. Unfortunately, our destination required us to cut away from the track and head through a steep-sided narrow glen sandwiched between the mountains Meall Mor and Stob Coire Easain. The narrowness of the glen and the steepness of the sides give very little room for route adjustment, should the water levels be a factor. The OS map shows a couple of paths along the base of the glen – these don’t show at all in the aerial photos. My experience with the OS aerial view is that, if anything, it tends to exaggerate the presence of tracks and paths. My local hills (East and West Lomond) look to be riddled with a network of small paths on this aerial view. In reality, most of these can barely be seen when you are at ground level. For the aerial view to show no tracks was a bit of a concern. At best, this would mean that any track would be very, very faint, at worst it would mean a few miles hacking through waist deep bracken to find our way. Hopefully, there would be some indication of a path, but if not, we would be able to use map and compass to confirm our position and route. With the general geography of this section, there would be few chances to “take a wrong turn”, even if there were no track at all, it would be a relatively simple navigational exercise with a map and compass – as long as visibility was reasonable. In total it would be around 15 miles or so and (allowing for the terrain uncertainty) should take something like 4.5 hours.

So, there it was, the plan for a running weekend which looked like: –

Head up to Corrour/Loch Ossian on a Friday, followed by a run round the loch.

Early train to Spean Bridge on Saturday, followed by a 15-mile run back to the hostel

Head back home on the Sunday

All I needed now was a suitable team to make this a weekend to remember…

The Team…

Anyone who has tried to organise a group activity like this, particularly one that involves even moderate cost, will recognise the way people respond to the concept.

Initially, there will be a high number of people who express an interest. This number reduces once the date is sorted (surprisingly, there are often better offers out there…) and further dwindles when the costs are revealed. The usual final barrier comes when a deposit is required – this separates the serious contenders from the casual enquirers.

With this weekend there were a number of other “barriers” for would-be participants to take into account. Sharing a dorm with strangers puts some off, sharing dry composting toilets requires the ability to accommodate a degree of discomfort.

There is also the run distance to consider. Whilst 15 miles is not a huge distance (and it wasn’t a race, it was to be a social run) it would be too far for some to consider. The fact that I couldn’t really confirm what the terrain was like for a fair distance of the run didn’t help either.

Despite these obstacles (or maybe because of them!), I found four like-minded individuals who were keen to participate. (As I haven’t told them about writing this account, I won’t give their names – not because there are any contentious issues within, it just seems like the right thing to do…)

Of the four, three were experienced ultra-runners (runners who complete races longer than 26.2-mile marathon distance) and the fourth was a seriously competent runner who had completed a number of half marathons. More importantly, they were all experienced trail runners, none of them took their running (or themselves) too seriously and all were a good social mix and were sure to get on, even if things got tough. The only minor concern that I had was the differential in abilities. For the three ultra-runners, the route and distance would be a breeze; for myself and the other member of the group, this would be pushing our normal limits. As this was a one-way route, there would be no opportunity for the slower runners to turn back early and be caught up by the faster guys on their return like an “out and back” route would permit. I reasoned that, if we slower guys needed to drop the pace too much, it would always be possible for the faster guys to continue at a good pace and we would follow on behind. Non runners may look at this and think “surely the faster group could just slow down a bit?” Well, yes and no…it is definitely possible for faster runners to slow down or even walk to keep pace with the slower guys, or to run ahead and wait. This is undesirable at a number of levels. It is not as comfortable or energy-efficient for a runner to drop below their normal “cruising” cadence and stopping would initiate the body cooling down – getting chilled wouldn’t help anyone. As someone who has spent the bulk of his running at the back of any given group, being the cause of the faster guys having to stop and wait is mentally painful, even if the faster guys are quite happy to do it. No-one wants to “spoil” another runner’s run. As long as the navigation was clear, there was no reason why we couldn’t split into our respective groups. As an added bonus, the fast guys would have showered by the time we got to the hostel, eliminating the need for us to queue…

To reduce the amount we had to carry, we arranged to eat in the restaurant at Corrour Station, meaning we only had to carry our food for the Friday evening and breakfasts for Saturday and Sunday. Despite this, you would be amazed at how heavy our packs were – if only wine and beer came in plastic bottles…

The date was set for a weekend in the middle of April 2017, hostel bunks and train tickets were booked and all was set.

The Weekend – Friday

The plan was for us to rendezvous at Upper Tyndrum Station in time to board the 14:35 train. The car park at the station is tiny, but we were early for the train, so there were still spaces to be had. The weather was clear and sunny which would be good for the loop around Loch Ossian we planned to do once we’d settled into the hostel. The station was deserted other than an American lady. There isn’t much to say about her except, at one point, she was sitting facing the sun…using a bra or bikini top as an eye shade. Strange. The journey time to Corrour was 50 minutes and the first section follows the West Highland Way up to Bridge of Orchy. Shortly after this the track veers northeast across the vast bogs and waters of Rannoch Moor. Despite the sun, the moor looked like a desolate wilderness – even the brief stop at Rannoch Station did little to detract from the rather gloomy impression left by the landscape. We alighted at Corrour, shouldered our packs and headed off to the hostel. Having “sold” the weekend to my friends on the location of the hostel, I was delighted that the sunny weather continued – at least we’d see the hostel in sunshine. As we approached the loch, the view was impressive.

If this wasn’t appealing enough, the hostel itself soon came into view…

So far, so good. Check-in and induction for showers, toilets etc. complete, we were ready to head off for our loop of the loch.

It can be difficult to define what makes a “perfect” run, but this was pretty close. The location, the views, the team, the laughs – everything just fell into place. Certainly just about every turn presented us with a new vista to behold.

(Photo – Little Adventure Photography)

After the run, there was time for a relaxing shower and then some drinks before our evening meal in the communal kitchen/dining area.

After the meal, as we sat and relaxed, I shared the route details for the next morning’s run. As part of the preparation, I had broken the route down into sections and had printed these out. I also laminated them to protect them from the weather, if required. The nature of the route meant that this covered 8, A3 pages. These were numbered and laminated back-to-back to give 4 sheets in total. As good practice suggests, everyone was given a copy – this would allow us to split the group safely at any point during the run. With our packs prepared for the next day, it was off to the dorms for a good night’s sleep.

The Run

We awoke to find that the sun had departed to be replaced with a dull grey sky. This wasn’t too much of a problem – it’s often better to run in cooler conditions and, as long as it stayed dry and the cloud base was high, we would have no problems finding our way back. A quick breakfast (porridge and fruit), last check of my pack and we were ready for the hike to the railway station. A brief pause to watch the red deer nibbling away at the abundant bird feeders around the hostel and we were headed up the trail. One of the first decisions made with regards to the run was what to wear. The general rule of thumb is “dress for the third mile” – that is, be comfortably attired for the point of the run where you have warmed up and are moving easily. This was OK in principle, but by default our run would be interrupted while waited for the train, then we would be in the heated carriage for half an hour or so before we actually started the run proper. As we knew there was some degree of shelter on the platform (a simple “bus shelter” type of construction) we were able to dress along the lines of the “third mile” rule. Despite the cold wind (which had also increased from the gentle breeze of the previous day) we were fairly comfortable when we got to the platform. By now, the brisk wind also contained some sleety snow and it felt like it cut through all layers of clothing. Whilst this may not have been unusual for late April on Rannoch Moor, it was a bit of a shock after the glorious afternoon that had preceded it. Not to worry, we had some shelter and it was only a light flurry. The first train from Corrour is actually the Kings Cross sleeper to Fort William – not especially known for its’ adherence to the timetable. An intercom in the shelter put us in touch with a railway official who advised that the sleeper had been hit by some technical faults on the journey north, and was running about 40 minutes late…not the start we were hoping for.

Whilst we were waiting, a chap from the restaurant beside the station came on to the platform. He was expecting a delivery from the train and chatted while we were waiting. When he asked where we were headed, I described the route we had planned for the day. As I got to the section where the path may not be too obvious, his eyebrows raised and he nodded slowly.

“You know you won’t have a phone signal for the bulk of that route?” he said.

“Yes”, I replied. He looked at the small running packs that we had – far smaller than a hillwalker’s daypack.

“Is that all the gear you’re taking?”

“Yes” – at that point the wind gave an extra strong gust and splattered the windows of the shelter with fresh snow.

“You know” he said “this sounds like the start of every search and rescue disaster documentary I’ve ever watched.” With that cheery observation, the train pulled into view and he headed off further down the platform.

Our joy at the arrival of the train was soon seriously deflated when the Train Manager told us “We have a problem with the carriage door locks not functioning correctly, so we can’t take passengers.” Apparently, attempts to correct this fault had been tried at a couple of stops, but the fault remained. All would-be passengers at the stops before Corrour had been left to get on a later train. It appeared that the passenger carriage doors were locked and could not be opened. This was a safety issue as any passengers could be trapped in the event of a collision or derailment.

With the relatively low frequency of trains stopping at Corrour (only three on some days) this could impact us finishing the run during daylight.

Meanwhile, having “dressed for mile 3”, I was now frozen. The limited shelter available coupled with the sleety flurries and our exposed location by the train were taking their toll. At that point, the guard arrived and joined the debate. He was on our side, but was out-ranked in terms of passenger matters by the Manager. Just as it was looking like a major re-think was on the cards, another vicious gust of wind delivered a flurry of snow. The guard pointed at me (my normally fluorescent-white legs now red and goose-pimpled with the cold) and said “We cannae leave them here…he’ll freeze to death!” With this, the Manager relented and we got on the train. As well as non-functioning locks, the carriage didn’t seem to have any heating, but it was still warmer than the open platform at Corrour. We were on our way… For the first three miles, the railway track was adjacent to the last part of our route, from the southern end of Loch Trieg.  I was pleased to see that the track was very obvious – the aerial map had been accurate. As the rail line headed north and away from our return route I looked over to the west to see the track disappear towards the base of Meall Mor with its’ rocky summit.

Arriving at Spean Bridge, a quick diversion was made to a local “Tat and Tartan” shop – this is my reference for the multitude of tourist-orientated gift shops that proliferate across Scotland. Their offerings are generally similar (tea towels, rugs, t-shirts, shortbread etc.) along with postcards which tend to be more location specific.  One of the group was looking for a pair of gloves (as the weather was colder than anticipated), another decided to purchase a top. I avoided the temptation of the various confectionery offerings – tricky as the tablet looked particularly appealing. (For those not familiar with Scottish sweets, tablet is a very sweet, high sugar delight, probably like a more solidly set version of fudge). I suspect that the modern recipes require the use of thermometers and stopwatches to reach the perfect setting point – generations of Scots mums and grannies will have made for years, most likely without reference to a recipe and judging everything by eye.

Once we left the shop, I retrieved the first of the map pairs from my pack and we were off. The first section was relatively straightforward and followed a minor road to the south of the train track. From this, we branched off south, headed through a farm yard and began the “trail” proper. A well compacted farm track climbed up towards the Killiechonate woodlands, where we would leave the more cultivated environment behind and head into the wilder part of the run. Two or three miles into the run we encountered a statue to the memory of a local minister.

From here the trail was a little less compacted but still very clear to follow. The route had climbed steadily and with about 5 miles completed we had gained over 400 metres of elevation – not particularly steep, but the two “non-ultra” runners were definitely pleased with the photo opportunities and snack breaks that allowed us to catch our breath. Our last view of Spean Bridge and the more agricultural landscape was behind us and the views ahead were more rugged.

We had travelled to the end of the first mapping pages, so swapped 1&2 with 3&4 – a quarter of the journey complete. The route continued to climb – the first 7 miles took us over 500 metres up into the hills. As we “peaked” the saddle between the hills, the track ahead was still clearly evident.

A combination of this and the glimpse of the clear glen ahead meant that sheets 3&4 were barely needed. These got us to the bothy where we would have lunch and check the maps again for the less-obvious tracks required to get back to Ossian. Lunch was a short affair (these ultra guys do tend to graze on the hoof…) so with any packaging securely stowed, I replaced maps 3&4 with 5&6…or rather, I didn’t. The next pages in my “carefully packed” map set were another set of 3&4. An in-depth search of my pack revealed that I had left the most important guidance maps behind! No great problem as I had given copies to the rest of the group. With a degree of embarrassment, I told the guys about my error and asked to borrow one of the spare sets to work out our route from the bothy. A brief circle of blank looks and head-shaking revealed that no-one else had packed the maps… I don’t know if this was (mis-placed) confidence in the planner, or simply group oversight, but regardless it left us with some early decisions that could make or break the time it would take to get back. This could present us with two or three problems. Sunset wasn’t until 20:30, some 6 hours away, so it was unlikely that it would take that length of time and we shouldn’t need torches – however the moving speed of myself and the other non-ultra runner was going to reduce as the day wore on. A full-blown retreat to Spean Bridge would leave us beholden to the train service – in any case we had no phone signal to see if there were any trains available. Thirdly, we had a dinner reservation at the restaurant at Corrour – I didn’t want to miss that as the food options at the hostel were very limited, and anyway, after a run like this I wanted a bit of a treat. (I did have another option but didn’t voice it. We could partially retrace our steps then take a track cross-country to Fersit. From there we could run the length of Loch Trieg back to Corrour on the railway line…listening for any trains as we ran. At least this route would be fairly flat, but it would likely be dark and not the most sensible idea…)

There was a good, obvious track heading south from the bothy but my memory of looking over the maps told me that this would soon cut west and eventually head to Glen Nevis and Fort William. Looking just east of south from the bothy gave a view of a rocky hill.

There were no paths that were particularly obvious, but the terrain underfoot looked easily do-able and I was fairly sure that this was the way to go, and that this hill was the one I had seen from the train earlier, Meall Mor. We headed off; the early section was fairly boggy so progress was slow. Sometimes we’d travel on the left of the stream, sometimes on the right (and sometimes split across both sides, looking for a clearer, drier footing). Eventually the ground conditions improved and our pace could increase a little. With some relief we reached some derelict crofts that indicated the end of the trackless section, the approach to Loch Trieg (and we were back on maps 7&8 – hurrah!). All that remained was a traverse of the southern end of the Loch and we would be on the track alongside the railway.

After the effort of running alongside the streams of the glen, it was initially a relief to get on the path by the loch.

The change in terrain quicky showed the difference in fitness between the ultra guys and us lesser mortals, so (with the route to base clearly discernable) we suggested that the group split and rendezvous at the hostel. I don’t know how much faster the other group was, but I was knackered and my run buddy was feeling every stone on the track through the relatively thin sole of his trail shoes, so our run/walk finish suited us just fine, and there was no pressure of having the others standing waiting for us.

I was delighted when the hostel came into view, signaling that the time for a proper rest was close approaching.

That was it…just over 15 miles and 766m of ascent. The run “only” took four hours, but with the frozen start and the map issue, it felt like a hard shift. Back to base with plenty of time to have a beer, rest the legs then have a shower before heading out to dinner.

Was that the full story of the weekend? Not at all…the shower incident, the meal, the log burner/shoe drying incident, the al fresco ladies toilets, the shark attack, the discount negotiation and last (but by no means least) the snorer in the men’s dorm are all worthy of explanation, but as with the best of these weekends away, what happened at Ossian, STAYS at Ossian…

Good meeting with the consultant this morning. In summary, my bloods are good across the board, apart from an alkaline phosphate figure which is slightly high. This could be the result of a flare-up following the radiotherapy, or it could be an indication of a more significant liver problem. This will be closely monitored going forward, but with the bloods where they currently are, and my weight creeping back up to the current “normal”, it is all systems go for chemo this afternoon.

Having reviewed the issues and severity of the side effects that I experienced, they will reduce the concentration of the infusion to be 85% (it was 100% last time). This is a standard response based on the years of experience they have with this chemo drug, so all is good.

The only other observations over this first chemo period are that my hair is thinning (Laura has already selected an appropriate beanie hat for me…purely coincidentally, I suspect it will suit her too…😂); I have also been more fatigued this time round – more resting periods and tiring quickly. Neither of these fall into the “hardship” category but the fatigue means that Nicola is doing even more around the house, as well as helping me get through the various side effects. I, on the other hand, am getting even better at lying down doing nothing…

The only other factor that has arisen over the last week or so is a pain in my back. This is just below my left shoulder blade and is particularly noticeable when I am lying flat (when I go to bed at night). It is just getting to the point of disturbing my sleep. When I discussed this with the oncologist, he advised that I have a couple of cancer sites on my T8 vertebra and swelling of these could be squeezing the nerves slightly. I will try a range of painkillers (so far neither paracetamol nor the opiate that I take have helped) to see if this can be controlled by pharmaceuticals. I can also have radiotherapy applied to this area to see if it helps as it did with the “saddle” area.

All in all, I am in a far better place both mentally and physically for the chemo this afternoon compared to three weeks ago, so anticipate that it will be fairly straightforward.

As to the severity of the side effects, time will tell. Regardless, it will be better than the alternative…

A quick recap – Sunday saw me spending all day in the Victoria Hospital in Kirkcaldy receiving a much-needed liquid drip whilst the source of my dehydration (4 days of constant diarrhoea) vanished. Happy as I was that things appeared to have stabilised, there was still a nagging doubt that there could be a recurrence at any time. This, coupled with the bleeding I was also experiencing meant that being at home didn’t deliver the instant relief and relaxation that it usually does. The memories of the previous 4 days and their associated discomforts and mental stress rather affected my ability to look beyond the immediate situation to better times ahead. I have had some “dark” periods previously, but I am usually able to box these away and focus on something more positive “around the corner”. That wasn’t so easy on Sunday evening, or the following days.

I’m not entirely sure why this was the case. I was discharged from the hospital as my bloods were good, my diarrhoea had stopped completely and my bleeding was no cause for concern. As an ignorant layman, this would normally give me the full confidence to carry on and put the hospital treatment down as “one of those things”. However I was finding both the (incredibly) sudden cessation of bowel evacuations and the (slow but constant) bleeding too difficult to ignore.

Apart from being very inconvenient, the bleeding is one of the “strange” side effects of my illness. In a number of respects, it is similar to my gallstones.

One of the very first observations made by a GP in the local practice (before I was referred to the oncology team) was that I had gallstones (he also noted that my liver was massively distorted, hence the referral). I had never experienced gallstones before so this was new territory for me. It soon became very clear that (under the wider aspects of my condition), the NHS has zero interest in my gallbladder. In the early days, if I asked about the gallstones, I was simply met by a look that intimated “you have MUCH bigger things to worry about”, and the discussion ended.

This is pretty much how it feels with regards to the bleeding. The big difference to me is that the bleeding has a physical presence and requires a degree of management. It may be “internal” but it collects and subsequently drains – mainly when I stand up from sitting or lying. Add in the (now almost obligatory) release of wind at the same time, and you can probably imagine why this is sub-optimal.

So…back home on Sunday evening, very happy to be there rather than the Vic and still “dry” (apart from the bleeding). I was also knackered and, despite the welcome from my family, the cosy woodburner and a nice meal, I was too tired to enjoy the experience. Early to bed, all wrapped up in case the blood loss increased or diarrhoea returned with a vengeance…

Monday morning came (I must have had over 10 hours sleep) – and still dry. It was now 24 hours with zero bowel activity – if anything, this put me on a higher alert footing, still awaiting the return of bowel mayhem. I rested throughout Monday and by the end of the day the situation hadn’t changed. Another good sleep and Tuesday was a repeat of Monday. Having had no bowel activity for 3 days was beginning to give me a little concern…particularly as I had eaten 3 reasonably good meals every day, including Sunday. All that porridge etc had to be somewhere.

Wednesday followed the same pattern. If it wasn’t for the blood, I might have wondered if I had been sealed up during the examination in the hospital…

I was now caught in the horns of a dilemma. Having had the previous significant bout of diarrhoea I was in no hurry to do anything that might set it off again. There again, I didn’t think it was a great alternative to be holding 12 meals worth of static waste inside me either. I decided to take a single laxitive powder later on Wednesday night and headed off to bed suitably wrapped up, just in case.

Thursday morning and…nothing. Actually, there were a couple of things…I thought that the overnight blood loss had reduced and I also thought I detected a little more feeling in the “saddle” area than previously. In pure bowel terms however, nothing.

During this time it is probably fair to say that I wasn’t in the best of places mentally. Feeling constantly tired is one thing – being tired and over-thinking numerous potential bowel/bleeding scenarios just added to my general malaise and, all in all, I was a bit of a grumpy git. Nicola has shown superhuman patience with me since the very start of me being unwell and I certainly tested this over the week. Before it could be stressed any further, Thursday afternoon saw the start of an improvement with the bowels. Thankfully, this wasn’t the dreaded move to the far end of the spectrum (“dry” to “tsunami”) but rather a gentle degree of transit. The mental relief was far greater than the physical one, but it was hugely welcome. Couple this with a continued reduction in the bleeding and it’s fair to say that Thursday ended up being a good day. Still some nagging doubts that a rapid change could be imminent, but generally my head was climbing back towards the light.

This brings me to today and the improving trend continues. I needed only a little encouragement from Nicola for us to go out for our morning coffee (and doughnut…) rather than stay at home as we had all week. Throughout the day I have been feeling better and better, and the bleeding has reduced significantly. Happy days.

With the previous chemo regime, we used the experience of the first cycle to get a feel for how the following cycles might go, and also what aspects might have a cumulative effect. The pattern of the first cycle at the moment looks like a week of feeling tired, but OK, followed by a complete sh*tstorm of a week (with a hospital visit), with an improving picture before it all starts again.

I am not convinced that this will be the pattern. Two days before this first cycle I finished my 5th radiotherapy treatment. This meant that my body was already somewhat the worse for wear before the chemo had started. I am far from an expert in these matters, but I know that going into a treatment when your body is fatigued means that the recovery takes longer and the susceptibility to side effects is increased. Given my lighter mood, I will approach Thursday’s session as the first “proper” one and extrapolate from there.

During the afternoon, Nicola and I started to collate a package of information/instructions as a guide to some of the things that I currently do, and that will have to be done once I have gone. This wasn’t prompted by me feeling any sense of “time running out” or that “Death’s hand is on my shoulder”, but more because it has to be done and we might as well do it sooner rather than later. Once you start listing stuff like this you soon realise that it’s a fairly big job. What makes it even more challenging is Nicola’s refusal to read a manual… Where I had pictured a little file of the appropriate documents, with additional post-it notes or highlighter marks soon became more of a novel-sized book describing how things are done in step by step detail. I think we may need to draft in Laura to assist. One of the areas to be recorded is digital access. So many transactions are online now (meter readings, phone billing, BT TV etc) that a thorough knowledge of email addresses and passwords is required. As most of these have been set up over a number of years, I have no idea what combination I used at the time. Add in the potential to be locked out after a few tries and this is beginning to look like another big job…

Anyway, this all gives me things to look forward to. The focus at the moment is on preparing for chemo on Thursday. This will require a degree of resting along with a little bit of exercise to start building up the fitness that the radiotherapy and first chemo session hammered out of me. I have also been losing weight (not surprising under the circumstances) so I need to reverse this as much as possible.

As this blog reads more like a diary of my bowel movements (or non-movements), I may try and make the next one a bit more interesting. Topics under consideration include –

Dining with Alan Rickman – what did he ask me at the bar?

The time I drove the Dublin to Belfast express train

What did Chrissy Hynde say to me at a Dundee bar?

Ton up on the M1 – what did the traffic police say?

…or maybe they’d be just as boring…

Smallish update pondering the mysteries of the human body and the effect an audience can have on performance. (Maybe I should have gone with Kajagoogoo “Too Shy” rather than Queen for the title… 🤔

The plan following the chemo reaction of the last couple of days was to rest much of the time. Given that almost any movement could induce an uncontrollable bowel event (of variable violence) followed by long periods tentatively waiting for any “aftershocks”, lying down doing nothing had a certain appeal. This diarrhoea issue is well anticipated by the chemo team and I have a step by step set of actions to follow, with review/decision points at various stages. This has been followed to the letter, resulting in a call to the Chemo Hotline on Friday when I had experienced 48 hours of loose bowels. A chat with the team moved me on to the next series of steps, with a review this morning. The summarised outcome was that, after 4 days of utter discomfort and remaining as close as possible to the toilet, this morning I was admitted to hospital for further investigation.

The admission process was quick and efficient so I was sitting in an individual side room (good toilet access…) ready for tests. Bloods were taken, the mandatory Covid test was done and a cannula was installed (as a re-hydration drip was required). Also required was a somewhat more intimate inspection, based on bleeding that was in evidence 😳

It has been said previously that you leave any dignity you have at the door of the ward, as there is very little need for it when you are under treatment. Even so, this was a new step for me.

The examination for the bleeding was to be relatively “light” (according to the Nurse Practitioner). She then explained that she would require the presence of a chaperone! (Might as well be selling tickets!) I was close to laughing out loud when the chaperone arrived but had to pop out to get her glasses… I did point out that the Nurse Practitioner would be better served with more protective clothing and danger money, but apparently this is not how the job was assessed. It is an incredible testament to the quality of the nursing staff that I have encountered that, half-naked, knees up to the chest and bracing for impact, I was still made to feel human and the whole process was carried out in as dignified a manner as possible. I still wouldn’t recommend it as a “fun” activity though…

Examination complete (nothing of concern detected) I was connected to a drip and was able to regain some composure. Based on my time in the chemo wards, I always like to make sure that the drip unit can be unplugged from the mains electricity quickly (it has a standby battery) and is free to get to the toilet if required. This seemed like a particularly good idea as I had spent most of the preceeding 4 days almost living in the toilet at home. Unfortunately, such was the cable routing and positioning of sockets, this unit would require a bit of faffing about with to make a dash – not ideal. Aware of my anxiety over this, the nurses gave me a buzzer and assured me that they would unplug me from the unit quickly if required.

Tentatively, at about 10:30, I lay down on bed and waited for the onset of “toilet trauma” of the last few days…this was made even more “exciting” by the requirement to use bed pans in the toilet to collect the outpourings for test and measurement. (Another new activity for me – a day of “firsts”!)

That’s where you would have found me at 10:30.

And indeed, you would have found me there at 10:45, and practically every minute between then and 17:15…lying down waiting on the repeat of the previous days.

And of course, nothing has happened. Nothing.

I can only equate this with taking a car to the garage when it makes a strange noise. As soon as the mechanic appears, the noise vanishes and you are left looking like an idiot. Anticlimax doesn’t come close.

It’s now 18:30 and I am waiting for the doctors to come and tell me what is happening. Hopefully they will simply give me the OK for the cannula to be removed and for me to go home. It does feel like I am stuck in limbo. I haven’t had any diarrhoea all day (which is a relief), but I also haven’t been given a reason why this should be. I am still experiencing bleeding, but no indication of the significance (if any) of this. I am keen to get home and settle down for the evening and even more keen to sleep in my own bed tonight, but I don’t want find myself back where I was yesterday, chained to the toilet waiting for the next episode.

Ideally, the team will answer these concerns and I can relax at home.

Perhaps over the next couple of days I’ll be bringing Del Amitri to mind – “Nothing Really Happens”…who knows?

(READER WARNING – THIS POST CONTAINS SOME DETAILS THAT I FIND REVOLTING, AND WITH LITTLE IN THE WAY OF LIGHT RELIEF. IF YOU ARE LOOKING FOR A LAUGH (THOUGH GOODNESS KNOWS WHY YOU’D BE READING A CANCER BLOG IF THAT WAS YOUR AIM) YOU MAY WELL BE DISAPPOINTED…)

OK, a couple of quick disclaimers. This is a record of the last few hours. The content has not been (and indeed, never is) seen by anyone else before it is published. In the course of the last few hours I have had a fair bit of “thinking” time under duress, and during this time I have projected MY thoughts of what may be happening with regards to others, particularly Nicola. ABSOLUTELY NONE OF THIS CONTENT HAS BEEN SPOKEN ABOUT BETWEEN US. Regardless of what is going through my mind at any given point, Nicola has been and continues to be one of the constants – always there supporting me. It will become apparent that I have had a bit of a mental dip, no doubt aided by the steroids and also affected by fatigue. All thoughts and imaginings are generated from within my head – there have been no external triggers/suggestions/comments in the slightest. Welcome to the inside of my misfiring neurones… Those of a sensitive disposition should wait for the next blog, which I hope will be more in the usual form… 🤞

Status reminder – it is now 9 days since my last radiotherapy treatment and 7 days since the start of my current chemo regime (Irinotecan). The key elements to take from this are…

The radiotherapy treatment was introduced to in an attempt to stop further compression of my spinal cord. This compression has introduced a degree of numbness or nerve paralysis which affects both my bladder and bowels with respect to “volume/pressure” within and the trigger to signal that emptying is required. The other effect is that the “shut off” (or containment) muscles for both organs are pretty much inoperable to a large extent. This is not the most pleasant situation to be in. There is a slight chance that this will improve – any such improvement may follow a “couple of weeks” after the last treatment.

The other key takeaway, this time from the chemo drug is that it is VERY likely to cause diarrhoea. This appears to be most likely during or shortly after the infusion – I was given an injection of Atropine on the day to offset this. However, it is also possible to suffer from a delayed start to the diarrhoea – usually 1 to 2 weeks after the treatment.

Final note…NHS information sheet –

I suspect you may now have an idea where this blog may be going…

In the 24 hours following the chemo I was lucky enough to be diarrhoea-free. This was possibly helped by the Atropine injection on the day, but in any case it was a relief as it had been a tough day without any additional sideshow. I felt reasonably good (even in my “limited control” situation) over the next few days. Given the nature of the paralysis, I have been taking some precautions. There are a number of products available to assist with mild/occasional incontinence (think Pampers for adults), in varying specifications. As my requirements are focused on being at home and more specifically overnight occurances, the need is really on the basis of “sudden emergency” rather than constant preparation for bulk containment. The degree of signalling from the nerves involved has been enough to avert any “accidents” (but there have been some close shaves…)

(Minor digression – I find the marketing blurb on the adult protection products a little bizarre. Assuming that one buys these as a “last chance” barrier to prevent or reduce collateral damage from an unavoidable (and pneumatically multiplied) release, I would far prefer adjectives like “robust”, “close-fitting”, “absorbent” etc. to lead the attributes, not “discrete”, “active fit” or “subtle colour”. I may not be the prime target audience…)

Anyway, I have been enjoying a period where the protection was simply precautionary, and the peak of the “pampers action” has been the acoustic muffling of the occasional light “parp” as I changed from sitting to standing. Yesterday evening and overnight brought about a swift change of requirements. I don’t propose to regale you with the sordid details, but the evening evolved thus –

Nicola and I have been watching a TV drama (Manhunt on ITV – well worth a watch if you missed it), I’d finished my tea – home made shepherd’s pie and was enjoying a glass of wine and the telly. Then I felt a sudden “ready to empty” signal from my bladder, so I stood up to head to the toilet. Standing up then triggered a similar “there she blows” from the bowels. As both currently depend on gravity rather than muscular control to void, time was of the essence. Unfortunately, it transpired that diarrhoea was now the majority of the content, and this was also pressurised… I doubt if Usain Bolt could have covered the distance required in the time available.

I am delighted to report that the protection worked as required – I was both surprised and impressed. Don’t get me wrong, there was still a lot of “housekeeping” to be done, but all in all it was a success. This became a bit of a pattern for the evening and night. Next to no notice, head to the bathroom, allow gravity to drain as much as possible, clean up, re-set ready for the next time. Sadly, this “next time” proved to be exceptionally random. At best, I might have 2 hours (just long enough to have me in a deep sleep, blunting my response time. At worst, it would strike when I had finished all the ablutions and was heading back to bed… Talk about back to square one. Essentially I spent the night either slow draining, dealing with the aftermath or waiting for the next event.

It was the between times waiting that started my head buzzing.

Most nights can find me awake but utterly relaxed and at ease in bed. Not asleep, but body and mind at rest. Last night was different.

Last night I started to consider the prospect that this could be the start of an unwelcome physical decline. What if the paralysis isn’t halted, but continues? This would bring full incontinence and mobility issues. With my previous “light, occasional farting” surely being embarrassing for me (and Nicola), how long before the accelerated symptoms became more irritating for her? Once on the downward spiral, how could I expect Nicola to cope with a 10 stone “baby” to clean and dress? The unfairness of the situation was overwhelming…in the wee small hours…whilst on opiates and steroids… I could dwell further on some of the darker areas my mind was leading me, but I won’t. I won’t because they present a number of scenarios, none of which I am actually proven to be on. I have had 7 months of unknowns and haven’t hit rock bottom yet – nowhere near.

In all honesty, I have no idea how we will cope – I just know that we will, because we always do.

Fact – I am 9 days past a radiotherapy treatment that may not show up any benefits for 14 days.

Fact – I am 7 days past a new chemo treatment that requires a couple of weeks to cycle through my system.

Fact – I am just starting the reduction of steroid intake.

Fact – following the instructions from the chemo team, based on their expertise with the Irinotecan, I am on a course of drugs which should assist in managing the diarrhoea.

Fact – ideas and notions you experience mixed with the above when you are knackered and awake in the dark soon dissapate in the daylight.

Hopefully this wasn’t too graphic, but remember that it is more for me than anyone else (selfish git!)

With the drain/clean/sort/fill cycle as the pattern through the night, I was going to try and bring in some classical reference such as Sisyphus endlessly rolling his stone up the hill or Prometheus having his liver eaten repeatedly (possibly apt?), but would rather use this…

As Julian Pettifer commented during the Vietnam War, in relation to coverage of the fall of Saigon…

“Happiness is a dry fart”

Avid readers (or any of you with far too much time on your hands) may recall that I had my first session of my new chemo regime last Thursday. This involves a drug called Irinotecan. Unlike my previous treatments, this program only involves one liquid infusion and a couple of flushes – probably around 2 hours rather than the 7+ of the previous course. In addition, there are no oral chemo drugs for the following 2 weeks. All in all, a simpler (and hopefully less demanding) process altogether. I do have to remind myself that the radiotherapy was by far the simplest of the treatments so far, and its’ “physical impact to time exposed” factor was bewilderingly large – a few minutes lying down on the platform and I was knackered for some time afterwards.

Anyway, Thursday’s session went well and I returned home dreading the potential onset of any side effects. As a good friend (and current cancer survivor) in the village reminds me when we meet each week – “welcome to cancer, leave your dignity at door – you’ll not be needing it”

An advantage of the shorter treatment time was that I was able to get some rest (on the “day bed”) when I arrived home. I suspect that I was still recovering from the radiotherapy impact as well, so rest was “enforced” by the home team. Physical rest is something that I am getting better at over the course of all the treatments. Initially, I wasn’t too good at sitting or lying down, as generally I felt like I should be doing “something” more constructive. Latterly, I think I could be described as a “chilling Master”. Mentally, it hasn’t always been quite as easy to exert relaxation control of late, but (steroids notwithstanding) I am getting there.

Back to Thursday evening, physically rested but mentally preparing for some of form of uncontrollable gastric armageddon. It can be tricky to navigate my head between how I actually feel compared to how I think I should be feeling. I have always enjoyed a good degree of self-control and the erosion of this (again, I blame the drugs) is difficult to accommodate. As an illustration…tea on Thursday. My “recovery” head listened to some menu options, largely focused on minimal likelihood of kicking-off any adverse stomach reaction. Given my still-heightened dread of the onset of any side effects, these options made perfect sense. However, “normal” head wanted a say in the proceedings, and fancied sweet and sour chicken… Normal head won and Laura served up a fine generous portion, which I managed with no issues.

Recovery head scanning for microscopic gastric changes to indicate that this may have been a little foolhardy; normal head thinking “that hit the spot”.

This is pretty much the pattern that has followed since Thursday evening – good breakfast (porridge, tea and toast), soup or sandwiches for lunch and a fairly standard evening meal (all with a nod to trying to keep my weight up). Snacks etc in between as I fancy.

No dissent from my body, no sign of the side effects, nothing except a degree of fatigue (and a huge sense of relief). I also have a degree of annoyance that I allowed my mind to run away with itself so much in advance of the chemo but hopefully I will be more in control next time.

The bulk of Saturday and Sunday (and indeed this morning) has been spent resting and I plan to continue with this for a few days further.

The spinal cord compression is still very much in evidence so I am still numb and a tad unsteady at times. The team did say that it could be a week or two for the results of the radiotherapy to be apparent, and the focus of this was more to offset further deterioration rather than an anticipated improvement. It’s less than a week since the radiotherapy finished…patience is required…

In the most light-hearted way possible, I can report on a negative “side effect” (and I stress light-hearted).

For first time in all of chemo, CT scan and blood sampling procedures I have had since May, I have my first bruising!

Light, painless and only “notable” as it is a testament to the skills of the nurses who have consistently (and painlessly) inserted and removed these various bits of kit over the last few months.

Were it not for the distress that ANY photo of my stomach would cause, I could show you the fine leopard or dalmatian pattern that my self-injection skills have left dotted all across my abdomen. I am getting a little more proficient at this but, as of tomorrow, I will have a second injection to add into the schedule. I could be running out of space on my stomach at this rate…

New day, new treatment.

Off to Queen Margaret hospital in Dunfermline to start my new chemo regime.

For a number of reasons, this was a different experience from the start. Unlike previous visits, I was exceptionally nervous this morning. No doubt there were a number of reasons for this. I was running slightly late for the appointment (and I hate to keep the healthcare professionals waiting). I am sure I am still experiencing side-effects from the steroids as my head was all over the place too. Jangling nerves and incoherent mental ramblings are not the best preparation for a morning of treatment.

Additionally, all of the focus on the new chemo so far (from the chemo team) has been around the side effects. I have been mercifully free from any significant issues so far but in the darker moments an element of “it’s only a matter of time” creeps into my mind. This has become more impactful due to the combination of two factors. Firstly, the drug can cause sudden “gut rot” (the term used by the nurses today, honest!) – a meteoric bowel movement. Secondly, my spinal cord compression is still very much in evidence so control of any such event would be VERY limited.

However, there’s no point in worrying about things in advance, especially as there is little that I can do to affect them, so off we went…

Arriving 10 minutes late wasn’t a problem as things were running 45 minutes behind schedule in any case.

As a nod towards my Highland Spring running chums, I was wearing my “motivational” t-shirt –

Once I was settled in my chair I could wait to be cannulated and for the infusion to begin. As ever, the insertion of the cannula was painless and soon I was connected and the fluids were flowing.

As a pre-emptive strike to the potential “gut rot” I was given an injection of atropine – this appears to have worked a treat (so far… 🤞

My mental turmoil apart, the biggest problem I had today was the heat in the ward. It was roasting there today. All windows were open but the treatment is also known to cause sweating. Add in sitting on a plastic chair with a plastic-wrapped pillow for comfort and it rapidly became an unpleasant environment. To top this off, the pharmacist came by with my new drug regime. This drug schedule introduces new drugs, elaborate timings and interconnections along with alternative pathways should there be side effects or function clashes. Oh, and another injection for me to master. In ward conditions and with my head in a mess this was totally mind blowing.

Thankfully, once I was home and slept for a couple of hours, Laura patiently went through this with me, step by step, creating a simple, clear timetable for me to use for the next two or three weeks.

I simply cannot over emphasise the support I have had to keep going through this – overwhelming and humbling.

I am now looking forward to spending a couple of days resting and recovering from the day.

Just a brief note to confirm that I completed the last of my 5 radiotherapy sessions at Edinburgh’s Western General Cancer Unit.

This was pretty much a carbon-copy of the previous 4, with the soundtrack courtesy of Dylan and Madness…

I was driven there and back by my sister – this was a good call as I was nodding off throughout the journey both ways.

In terms of the other drug side-effects I mentioned yesterday, I had an illustration of how confused or fatigued that I am feeling at the moment…

When I was at the unit, the nurses asked how I was feeling. I told them that I was feeling more pain in my legs than usual. Even getting on and off the table of the machine was trickier. I simply put this down to the cumulative effect of 5 treatment sessions.

The real reason became apparent once I returned home…the little tub of opiates, paracetamol, steroids and iron tablets that I had diligently sorted out for taking at 08:00 was sitting untouched on the worktop. This despite being asked if I had taken them on a couple of occasions before I left (to which I had answered “of course!”, with a touch of testiness.) A bit of a hasty rescheduling on my return and I am now back on the plan.

So, radiotherapy done and dusted (review in 4 weeks or so), day resting tomorrow and new chemo starts on Thursday.

Brief update after my fourth radiotherapy treatment at Edinburgh this afternoon.

Today my other sister (Kay) took care of my transportation needs and she (along with her partner, Graham) got me through to the unit in plenty of time, making for a relaxed trip. I like to arrive early especially as my mobility is gradually reducing (more on that later).

The treatment was fairly uneventful – the usual excellent support from the nurses as they jiggled me into the right position. The only potential problem came at the “keep absolutely still” part of the process. As they were playing a soundtrack including The Jam and Meatloaf, it was hard to stop tapping a foot in time (or worse still, singing along!!) I did manage to contain myself, so all was well.

Tomorrow sees me with a blood test first thing (which will hopefully be the green light for chemo on Thursday), followed by the final treatment in Edinburgh. I’ve probably said it before but it is amazing how tired I feel after such short treatment time.

Speaking with the chemo team this morning it will take a couple of weeks before the outcome of the radiotherapy and steroid treatment will be known. Indeed the symptoms I have at the moment may well deteriorate further as an effect of the hammering I’ve taken over the last few days. This could mean me becoming more unsteady on my feet as well as further spread of my “saddle” numbness/paralysis. I am hoping that this situation will improve as it adds a level of stress I can do without…

As with the rest of my NHS treatment, the support of the team and care given has been exceptional.

My current status I can only really describe as “strange verging on bizarre”. I won’t bore you with the full details, but the summary is something like –

Sleeplessness – I can lie for hours in bed at night, awake but relaxed and with my mind pretty much empty.

Leg pain – my legs (mainly calves) ache a lot, as if I have recently completed a hard hill run.

Concentration – utter lack of it! I find it very difficult to hold a thought or follow a trail of conversation. This makes watching any TV programmes with complex plots, doing crossword puzzles or even reading a a book is bit of a challenge.

Emotional moods swings – OH MY GOD! One of the hardest changes to cope with are the completely random (and wild) emotional swings. These do not appear to have a specific trigger and can be overwhelming – and VERY sudden. As someone who considers himself to be relatively stable in this context, and who normally applies a fair bit of self control (honestly!) this is an entirely new area for me. It is far from comfortable…

That’s all for now – depending on the level of fatigue, confusion, paralysis etc, I may reduce the blogs (and physical contact, outwith my family) for the next wee while as I try to adjust to this new “normal”. Bear with me…

I think I mentioned that I was meeting up with some of my running chums from Highland Spring after this morning’s hospital visit?

The original idea was to meet at South Queensferry and run about 3 miles over the Forth Road Bridge and back. Up until the current health curveball arrived last Monday I was fully intending to join the group for most (if not all) of the run. Sadly, my condition (and side effects) at the moment meant that I would simply be an observer today.

The group is the core of a “couch to 5K” programme that I was involved in at Highland Spring a couple of years ago. I am in no way a running coach or mentor, but as I would plan some of the training runs, I think I got the blame for some of the more “challenging” routes we tried. Allegedly, if any voices were raised querying the route selection for altitude, roughness or general insanity, my response would be “how hard can it be?”

This seems to have developed into the mantra for the club, members of which have completed ultra runs, marathons, half-marathons and 10k runs, not to mention all the training runs in all weather conditions. Not at all bad for a group where some of the members swore they would “never do a 10k”. Despite any of my input, they have kept at it, and it was fantastic to see the “hard core” or nucleus of the team today.

They headed off for the run and we arranged to meet up for a coffee afterwards. As I’ve said, this isn’t “my” group, we are just a bunch of pals that hooked up after work for a run from time to time…I can barely articulate the (possibly miss-placed) pride I felt when they took off their jackets to display the t-shirts printed for today –

Thanks guys, for the rendezvous, the banter and the t-shirts – honoured and humbled x

Saturday and another treatment through in Edinburgh.

I had a good sleep so drove there by myself – fine easy drive. I arrived just in time for the 10:30 appointment and it was straight through to the treatment room.

On the table, position adjusted and procedure complete all within 10 minutes.

Apparently, the treatment is in the form of photon beams and the bulk of the brief session revolves around getting me in precisely the right position (hence the tattoo target and sticky crosses I currently have attached). It’s an impressive bit of kit –

All a bit of “James Bond” – this will be the closest I will get to that, other than the time I parked in Glen Etive near the location used in Skyfall…

All done, so off to have a coffee with chums from Highland Spring’s running group – might even manage a wee bit cake too…

Whilst yesterday’s visit to the radiological suite lasted less than 10 minutes, the side effects were a little more longer lasting. For the first time in a while sleeping was difficult. I lay awake for long periods of the night. These awake periods were strangly peaceful, with no (or very few) dark thoughts and felt almost meditative. Knowing that I had no activities planned until the afternoon of the next day (Friday) meant that I could relax throughout the morning to recover from any fatigue. Come this morning and I definitely felt tired. This wasn’t the fatigue of lost sleep, but rather an internal feeling of “aching within my bones”. On getting up I felt slightly unsteady on my feet and the feeling when moving my legs was one of lethargy. It’s amazing that such a short treatment could have such a big effect overnight.

I am also on a temporary course of steroids as a chemical attempt to reduce the swelling in my lower spine. These too are bringing side effects. I was warned that they could generate feelings of depression (or even euphoria!) as well as gastric upset – just what I need at a time of sleeplessness and reduced excretory control… I have had no hugely depressed or euphoric periods so far (at least I haven’t noticed any). I can burst into tears reading the instructions on a microwave porridge sachet or a crossword clue. Would be visitors beware…

I am VERY keen to get this phase of the process over with.

The second treatment at the Western was a carbon-copy of the first except I was driven through to the unit by my sister (thanks Louise x). Apart from the company, it also avoided me driving through the busy Edinburgh traffic late on a Friday afternoon. The weather was unpleasant on the way down, but we were rewarded with a glorious sunset on the way back.

Tomorrow I will drive down by myself, morning fitness permitting.

After yesterday’s introduction to the team at the Western General (and the addition of a tattoo to my 6-pack), today I had my first radiotherapy session there.

The appointment was at 16:30 and (as I had elected to drive myself through) I left home early to work out the route/parking and to make sure I wasn’t late for the appointment. As it was, I found a space right by the front door of the unit so arrived just before 16:00 (always better for me to be waiting for the professionals, rather than have them waiting for me…)

Perhaps typically for a late afternoon appointment, the schedule was running late, so I was actually taken through for the treatment at 16:55.

As treatments go, this was one of the simpler ones I have had. All I had to do was lie down on the table of the machine, jiggle about (not a pretty sight…) until the the target stickers on my hips and the tattoo on my (ahem) 6-pack aligned with the locating lasers, then lie still for about 7 minutes. That was it. The biggest potential risks were minor uncontrolled emissions from my bowels or bladder when I stood up afterwards due to the current numbness in the nerves involved. Thankfully, the much-depleted control that I can exert was enough to “contain” the situation, avoiding any embarrassment on my part.

That was it. A relatively smooth drive home and I was home by 18:00 – time to relax with a beer in front of the woodburner… 1 down, 4 to go…

After a great night’s sleep, this morning saw me heading over to Edinburgh to prepare for the radiotherapy program.

The instructions were to arrive at the hospital at 09:00. No directions or location was given, so Nicola dropped me off at the main entrance. I was sent up to a reception area, and was immediately told to walk outside and head down the road to another building. This contained the Cancer Assessment Unit and they had a space in a bay ready for me.

A consultant reviewed my last few days and outlined the proposed treatment. (As a side note, she read from my file that I am not a “typical” cancer patient – I have no idea if this is good or bad…) On reviewing the MRI scan from yesterday, this consultant had identified some cancer tissue in exactly the area likely to be associated with the numbness I am experiencing. The plan is to treat this area with radiotherapy, with the hope that this will inhibit any further growth. It will be a bonus if it also reduced the swelling and improved the numbness, but this isn’t a given.

My treatment plan for the next few days was set up this afternoon – I will attend the unit here every day (apart from Sunday) finishing on Tuesday next week. To prepare for this, I had a CT scan to identify the “target” for the radiation – this has been marked with a permanent tattoo!

The actual radiotherapy treatment only takes about 15 minutes, so that is good. Side effects may include “sunburn” in the treatment area, gastric upset and increased pain and these are likely to extend for a week or so after the treatment finishes. This will coincide nicely with the start of the chemo…

I am now ready to proceed tomorrow and am just waiting for a revised steroid prescription before I can head home.

Another night in my own bed – superb!

OK…my MRI scan was conducted at 13:20. This is the first time I have had this type of scan and I was delighted to hear that it didn’t require the consumption (and retention) of a litre of water in advance, nor did it introduce a tracer that gives your body the feeling that you are wetting yourself. Both of these would have been a bit of a challenge under my current circumstances…

The process involves lying on a powered trolley that is moved inside a tube – if you have seen any submarine films, think of a torpedo tube with lights. The trolley moves back and forth within the tube stopping from time to time as the scanning takes place. I was given earplugs and headphones (to hear any instructions from the team), along with a rubber bulb to squeeze if I was encountering a problem – I suspect this would be a nightmare if I was claustrophobic. All I had to do was keep absolutely still for around 40 minutes. When the scanning process is operating, the equipment is very noisy, despite having earplugs and headphones on. Bizarrely, the initial scanning noise reminded me of the opening bars of “Ca Plane Pour Moi” by Plastic Bertrand – I was going to mention this to the team, but decided that this song was probably twice as old as they were.

Back to the ward and it was a case of waiting for the results. A delightful break in the monotony of the day came in the shape of Laura. She brought in some homemade chocolate chip cookies (which were shared with the nurses), along with some other little luxuries. It was great to see her and it really improved my day, especially after the sleep deprivation. At around 4pm, some time after Laura had left, the consultant spoke to me and told me that there was no evidence of compression on the cord, so radiography at Edinburgh wasn’t under consideration. They were planning to speak to my oncologist regarding steroids instead, but they also didn’t think these would have any effect, so essentially I just have to carry on as I was.

I must admit that I was a little disappointed with this and it seemed like I was going to be left to “manage” my (albeit relatively minor) incontinence issues.

However…

The discussion with my oncologist turned this around completely with the result being a radiography treatment tomorrow in Edinburgh.

This pleased the staff at the Vic as they could put me back in the waiting room whilst a bed was located in Edinburgh, and an ambulance was available to take me through. When I asked how long this was likely to take, I was told that the ambulance availability was expected to be mid-evening. I asked what time my treatment was taking place and was told that there was no time planned as such, they start at 09:00 and it will be a case of waiting for a slot. I was also advised to take an overnight bag in case my slot rolled over to Thursday… I didn’t fancy this so suggested that I just went home tonight and drove myself to Edinburgh for 9 o’clock – this would give them my bed at the Vic and “save” a bed at the Western General in Edinburgh, along with an ambulance (or taxi charge for the NHS?). The primary benefit for me being a night in my own bed before the hanging around tomorrow.

A brief discussion between the hospitals and this was agreed. The only fly in the ointment was the need to collect a prescription for steroids from Asda on the way home. This was problematic as there was a locum pharmacist on duty and it took ages to be served – 4 in the queue, 45 minutes to get the pills. This was close to unbearable in the circumstances as I really just wanted to be home.

Home now, sitting on my own seat (far more comfortable than the waiting room) and with my “girls”. I am sure this will give me a better starting point for tomorrow…

Whilst I have been a little quiet on the blog recently, there have been some bits and bobs going on that I thought I’d update you with.

Getting the main news out of the way, I thought I’d put up a “where am I” competition. No prizes (cheapskate!), but below is a photo of my location this morning –

Extra points if you can identify the ward and bay number…

So how did I end up here…? (WARNING – REMAINDER OF POST MAY CONTAIN TOO MUCH INFORMATION FOR THE FAINT HEARTED…)

I think I mentioned previously that I had a pain in my hip. This was controlled with a cocktail of paracetamol and ibuprofen, but if I woke during the night, the niggling pain could prevent me getting back to sleep easily. A consultation with my doctor identified that one part of the pain was caused by a condition called piriformis. Without going into details, the outcome was that I could try codeine last thing at night. This I did on Wednesday and Thursday last week – I slept better, but then suffered from constipation. Doing a quick consideration of which was the lesser evil, I stopped taking the codeine. This left me with the aftermath of the constipation to work through. Using appropriate medication to help ease things I was aware that I has a slight numbness. Never having used codeine previously, I assumed that this was a side effect, but in any case I raised it with a call to the Chemo Team on Monday morning. The Nurse Practitioner got back to me quickly to advise me to go to admissions at the Victoria Hospital in Kirkcaldy as quickly as possible to get an MRI scan on the base of my spine. The concern is that the cancer in this area, whilst it was arrested by the first chemo, could now be applying pressure to my spinal cord. There is also a possibility that the vertebrae in that area are compressed, again causing pressure on the cord. To investigate this I was to have an MRI scan which should identify the cause(s) and direct treatment thereafter. There are a number of treatment options depending on the cause. Best case is a course of steroids to reduce swelling. Beyond that is a course of radiotherapy in Edinburgh. The major concern is that the current numbness develops into paralysis if it isn’t corrected quickly. That would be rather inconvenient to say the least.

I arrived at the Admissions ward at 17:15, keen to get the scan ASAP. I was also to have blood tests and an ECG. Unfortunately, by the time I was actually admitted (23:15), the scanner team were long gone. I was allocated a bed (at around midnight) and waited to speak to the doctor. Following a brief consultation with the doctor I was advised that the MRI scan would take place today “first thing” and then the results would be reviewed and the next steps would be agreed. Lights out at 02:00 and I settled down to sleep.

(I know that I have an exclusive cohort of readers who were with me on an epic running weekend at Loch Ossian. To these guys, especially the blokes in dorm with me I would like to say, you have not experienced noisy snoring – this ward is off the scale!)

Such was the noise level from my co-inhabitants here I decided to use my little DAB radio to drown them out. This would have been great if it could get a signal – it was not to be… I downloaded the BBC Sounds app and instantly had access to tons of content – result! Earphones in, off to sleep by 03:00. Woken at 05:00 for blood pressure and heart rate monitoring. Back to sleep until “lights on” at around 06:30. Showered and breakfasted by 09:00 and now waiting for the MRI scan.

That’s how my weekend ended. By means of lightening the tone of the blog a little, I thought I’d share a little bit of the fun I had over the weekend…

My great friend John came up on Saturday and brought his Bernese Mountain Dog called Hagrid. Hagrid is a lovely, canny dog and we enjoyed a walk in the estate to look at a great wee art exhibition at the sawmill.

He is a well-trained dog and very loyal to John. He was no trouble at all and slept fine all night (according to John). It was possible to distract him slightly when breakfast was being prepared…but I think this can be forgiven as bacon rolls would distract most of us.

Given my current status, I think I will have to cut back a little on some of my planned socialising, as my focus will be on getting myself as fit as possible in advance of the next round of chemo which commences on the 4th of November. Blood test results from last night show good red cell count and good albumen – pointers

Super-prompt update! My scan is booked in for 13:20 today, so I can sit here and relax until then.

Quiz answer – Victoria Hospital Kirkcaldy, Admissions Unit 1, Bay 1 – congratulations to anyone who was remotely close.

It has been three days since the meeting with the oncologist, and, to be honest, I am still in a bit of a dazed state.

I certainly wasn’t expecting to hear that (by some miracle) all my cancers had shrunk to insignificance, but, by the same token, I wasn’t expecting to hear that the liver had deteriorated so badly. This has more to do with the fact that I had been feeling pretty good, despite the chemo, not because I was overflowing with misplaced optimism.

I think it is fair to say that it was a major blow mentally for both Nicola and myself as we were sitting there.

Three days on, where am I now?

Overall, still pretty low, if I’m honest. If I try to consider the discussion dispassionately, it had a lot of similarities to the first diagnosis. Yes, the “timescale” if we do nothing is probably shorter (this wasn’t too clear, but I interpreted it as 3 months or so); with successful treatment, this could be “months, not years”, which I took as an arbritary 6 months).

Whilst that wasn’t too different to the first time round, I felt that the tone, body language and delivery held less optimism than previously. This tone also permeated through the description of the chemo options. Two options with similarly low success rates. The chemo regime was described as “tough”and the side effects as “very likely”.

Dragging any positives from the discussion is a little tricky.

On the plus side, the treatment will involve the use of one liquid chemo treatment only – this should mean only a morning or afternoon at the hospital. There are no follow-up chemo drugs to take at home, so my intake of pills will reduce significantly. With the cancellation of the planned final session of the first cycle of treatment, this means that tomorrow’s chemo pills will be the last. (The daily stomach injections have to continue…for a brief moment it sounded like these would be replaced by a pill, but then the doc changed his mind…)

Still attempting to drag a positive out of the situation, I will be going into this cycle of treatment in a far better state of health than the first cycle, which was preceded by a couple of nights in hospital and a couple of blood transfusions. Speaking of blood, my current blood condition is “very good” – this was good to hear as the blood condition is a key indicator of liver performance. So my liver is very badly mid-shapen and affected by secondary tumours, but is currently functioning well.

I try not to lose sight of the fact that the first round of treatment had a very positive impact on the prime cancer and almost all of the secondary ones – only the liver bucked this trend. The new cycle of treatment will probably start in three weeks time, so I should have a short period of “comfort” before the effects of the treatment take hold.

Not the cheeriest of posts but given the “here we go again” nature of the topic I don’t think that’s surprising.

It hasn’t been three days of utter despair and misery – we have had a lovely visit from some of the Essex-based family, and I also spent time with some old friends who took the time to travel from a number of areas to be here. These visits are very much appreciated.

I have no idea when my next post will be, but I am sure it will be from a (slightly) more positive place…

A combination of good and not-quite-so-good from the meeting with the oncologist today.

A summary of the positives would be –

The initial oesophageal tumour has responded to the chemo well, and has not grown since the previous scan. The secondary sites in my spine, lungs and abdominal cavity have also reduced and are not currently a cause of concern. My daily injection regime has also kicked all of the lung clots into touch. So far, so good…

However, sitting squarely in the “sub-optimal news” corner is my liver, or more accurately, the extensive range of tumours in my liver. Whilst these reduced slightly at the start of the chemo sessions, that reduction has now reversed and they are growing. Such is the spread and impact of these that it is now very likely that this will ultimately be the cause of my demise. Left untreated, we would be looking at a couple of months – with a successful response, this may be stretched to six months. These figures are based on averages so the timescale could be longer (or indeed shorter). I suppose it depends on just how average I am. There are two chemo drug options and the consultant has suggested the one less likely to cause nerve and joint issues. The effectiveness of each option is similar, but unfortunately, both have a relatively low success rate. The range of possible side effects is much the same as before but any effects are going to be more extreme. On the plus side, the treatment only involves a drip session every three weeks or so, and there are no chemo drugs to be taken at home. By the sounds of it, there may be plenty of other drugs to be taken to combat the nausea and diarrhea. Hair loss is also pretty much guaranteed. Oh the glamour!

Pausing for a nanosecond to consider my options, I have signed up for the new chemo regime and it should start in the next 3 or 4 weeks. The final session of the current course has been cancelled to give me a bit of recovery time before it all starts again. If it all proves to be too arduous, I can opt out at any point.

So where does this leave me?

In reality, it’s not that much different to the original discussion with the team. The original timeline (6 to 9 months, if the treatment helped) took me to a similar point – I was hoping for better as I have been feeling so good recently. It is simply a (slightly painful) reminder that I am “work in progress” (and rather shockingly, I am mortal!!), and that I have been fortunate so far.

To endorse the normality of the situation, I am now about to embark on a food shopping trip and (as it is raining and blowing a hoolie here) I will then go out for a wee run.

Life goes on…

Bit of a “mixed bag” post today…

Firstly, I’d like to make a comment about comments.

A number of people have kindly posted comments on my blog, and I never respond to them. There are a couple of reasons for this. I made a conscious decision that the blog would be “one way” and not be a platform for open discussion. This is partly because it is my outpourings of whatever is in the confused pit of my mind at any given point, and partly because I use my phone for blog inputs and my typing is appalling. I do, however, read every comment that is made (and hopefully have been able to mark them as “read”, if I am pressing the right button…).

I have also received literally hundreds of messages of support via lots of other sources, and again am grateful for these. These messages and comments have been a huge help in muddling my way through the current situation – I hope I have responded in person to all, that was certainly the intention.

This support was brought into sharper focus following my last post, which was one of my more negative notes. I have tried hard (with limited success) not to refer to that post as a “blip” or to suggest that things are now “back to normal”, as (unfortunately) the content was an accurate account of the normality of that particular day. It is a true reflection of the reality we are in. The fact that such days have been very much in the minority so far is a blessing – they are tough to negotiate and not a lot of fun.

So I haven’t “turned a corner” or “recovered”, I am simply now on a different day.

So what is today’s reality? One of the bizarre mental beatings that has occurred since the second of the chemo sessions has been an occasional sense of guilt. This has been driven by the relative lack of side-effects that I have experienced compared to so many others going through similar treatment. The potential nausea, ulcers, gastric upsets and host of other conditions that I have avoided so far has been a source of great relief to me personally. I have always been advised that the chemo effects will build up and, with one more session to go, there are signs that this could well be the case. Following the latter period of relative comfort during the cycles of drug taking, I do feel that there is a cumulative impact beginning to show. The signs are not hugely detrimental if taken as individual factors – swallowing the drugs has become more difficult, my sense of taste has moved further from the old normal, sleep quality is poorer, appetite is more variable, I get tired more often. As I say, individually, these are not overly significant but as a combination they are becoming both physically and mentally wearing.

However, all going well I should have my last chemo session on the 25th of this month and 2 weeks after that I will have no more drugs to take (other than some painkillers, iron tablets and the anti-clotting injections). I am certainly looking forward to the “time off” from the chemo medication.

Please note that this is simply an honest update of the current status. I am not looking for sympathy or a pat on the back, not in the slightest. Uncomfortable as the medicinal regime may be, it is still better than the alternative…

Thursday next week sees the review meeting with the oncology team – it is impossible to simply “forget” that this is approaching but I am trying hard not to over-think every little niggle or ache, and to focus on other things.

Looking forward to events next week (assuming that today’s mood continues…) I have a couple of visits from friends planned for Monday and Tuesday, family up visiting from the “deep South” (Essex) over next weekend and a wee reunion with a small group of friends on Saturday too. I will factor in some additional rest throughout the week to maximise the chances of enjoying the company.

Next update is likely to be on Friday…

As I alluded to in the last post, we were planning to have a couple of days away. Unusually, compared to other trips, we were going to stay with some great friends who had kindly offered us space in a house they’d booked in Aviemore.

A look ahead at the weather (and working around my hospital/doctor appointments) fixed yesterday and today as the best days for us. Yesterday started well with an easy morning followed by a relatively relaxed drive up to Aviemore. Recent improvements on the A9 are helpful, traffic was fairly light and the sun was shining. Once we found the house we decided to take advantage of the good weather with a walk to the Green Loch near Glenmore Lodge.

The walk to the loch was lovely and the loch itself is stunning.

We carried on a little further, up to the bothy at Ryovan, enjoyed the late afternoon sun briefly, and set off on the return to the car…

…then it happened…

…I/we have no idea what triggered it, but we were both totally overwhelmed with feelings of utter sadness and melancholy.

It could have been a combination of things – two hospital treatments, being back on the “big drug” regime at home (and the additional stress of ensuring that all of the drugs had been packed). This also brings pressure of planning and timing the various drug intakes throughout the day – all things we cope with together at home regularly, but it all adds up.

Possibly, as we haven’t experienced a “joint meltdown” for a while (or a “solo” one for me, for that matter), we just set each other off. Possibly it was the creeping subconscious “how many more of these good times together will we have? ”

Regardless, it was all-consuming, unstoppable and completely blew away our ability to socialise.

I know our friends would have been absolutely fine had we returned to the house and just locked ourselves away for a while until it passed, but the need to be home was overpowering.

A brief pitstop at the house to collect our luggage and a short, teary and apologetic departure (from our very understanding friends) then we headed home.

No doubt we will have more of these episodes to come, it’s all part and parcel of the situation.

Enough “warts and all”, we’re going to have a good day at home…

CT scan completed. No stress, no hassle and no desperation on the bladder eruption front – totally different to the previous scan.

A moment of levity on the preparation for the scan – the nurse saw the bruise on my left arm and I explained that it had been tried unsuccessfully on Friday for my blood samples. No problem, she took the trolly round to the right hand side of the scanner to try the right arm. “It’s not any better than the left arm” she says. I suggest we either toss a coin or just go ahead with the right arm, as she’s at that side. This is what was done, and it all went smoothly. Again, when the tracing drug was injected I was reminded that it make me “feel hot” and “like I was passing urine – but wouldn’t be, it’s just the sensation it gives”. “How are you so sure?” I asked. “In all the years we’ve done this, it’s never happened” which was reassuring and relaxed me..until she added “well, maybe once or twice…”

Cue concentration level instantly increasing…

However all went well and the results will be reviewed with the oncology team at the end of next week.

Apart from the daily drug routine, not much to report until after the review next week so unless I update you on my holiday (planned for Wednesday to Friday this week) or any of the other bits and bobs I get up, the next update will take place at the end of next week.

TTFN

All going well with the Oxaliplatin, about 30 minutes to go until it’s finished. After that it’ll be another 20 minutes flush then I should be disconnected and can head home. Cannula arm is getting a little sore, but isn’t too bad considering the amount of fluid that’s been going in.

The only little problem I’ve had this session is due to my decision to increase the volume of water I’ve been drinking. This has had the downstream effect (no pun intended…) of requiring multiple trips to the toilet. Normally this isn’t a big issue – I unplug the drip unit from the mains electricity and roll it across the floor on castors. When it is unplugged, it gives a moderately loud “beep” to indicate that it is operating on battery power, so should be plugged in when possible. Today’s unit must have a defective battery as it gives out a much louder “low battery” warning almost as soon as it is unplugged. This wakes any of my sleeping co-patients, and let’s everyone in the Oncology ward (and possibly the entire hospital wing) know that Sandy has gone to the toilet again. This is no place for the sensitive or easily embarrassed…

All in all, it has been another textbook demonstration of chemo nursing at QM. Between the team here and the team at home, I am always in the best of hands for care and attention.

Minor update…first drip competed, 30 min “rest” drip almost complete and all going well so far.

It will soon be lunchtime but, luckily for me, Nicola prepares a packed lunch for me (as well as the coffee for mid-morning). Whilst the quality of the sandwiches provided by the hospital is good, a home-prepped lunch is always a bonus. I think today’s will contain chicken sandwiches – always excellent!

With the flush-through complete, I am now getting two small drips simultaneously. These are Sodium chloride and Magnesium sulphate. It did require a modification to the cannula pipework to allow for the simultaneous drips, but that was minor and pain-free. These should be finished in around 15 minutes and then I will be on to the “main course”, the Oxaliplatin, which will be running for 2 hours. It is warm in the ward (and I have eaten a good lunch) so I suspect I will snooze for a bit once the Oxaliplatin is flowing…

OK, I had planned to do a blog while I was undergoing treatment, but with all the “excitement” I kind of forgot. I will probably end up doing a number of small blogs rather than one larger one, but the overall result will be much the same.

I arrived promptly, just before 08:30, and was taken to the ward almost immediately. First in, I picked a corner chair (as it has the much-coveted two tables, one on each side). This gives room for my clutter as well as space for the paperwork that accompanies the chemo.

Once I am settled in, I was weighed (slight increase 😁) then the pre-meds were issued and the cannula was inserted.

Once suitably plumbed-in, the drip is activated. This commences with some saline followed by injections of a steroid and piriton. Normally I would progress straight away on the immunotherapy drug Trastuzumab, but the delivery was late this morning so it was back on the saline (to keep the flow going until the Trastuzumab arrived). This arrived just before 11:00, so I am currently midway through the first treatment, with about 30 minutes to go…

I have also had a review with the pharmacist, and have been issued with the bumper packs of the various drugs to see me through the next two weeks.

In amongst all this activity, I have had a mid-morning coffee, accompanied by a couple of Abernethy biscuits – I wouldn’t want you to be concerned that I was suffering any hardship.

More to follow…

A llittle Saturday morning update…

I had blood samples taken for testing at 10:30 yesterday morning. It wasn’t the usual Practice Nurse in attendance, but a Phlebotomist (whom I had never encountered before). Unfortunately, my first treatment with this individual wasn’t quite as smooth as I have come to expect. The first needle was tried in my left arm (at the inside of the elbow). This proceeded to flow very slowly, then stopped altogether, so a change of vein (and arm) was required. Thankfully, my right arm stuck with the plan and filled the two test tubes very quickly.

The faffing with the samples took longer than usual – I wasn’t on a particularly tight schedule, but had friends visiting at 11:00 so wanted to be at home when they arrived. As it happened our visitors were running slightly late (lateral flow testing and sat nav issues) so this wasn’t a problem.

It was great to catch up with Kath and Gus. We haven’t met up for many years, but (as happens with good friends) we just picked up as if we’d all been together yesterday. Much chat and laughter, and a plan to meet again in the near future – good times.

Late afternoon I received the call I was hoping for – my bloods had tested OK and the chemo session will go ahead on Monday. This will be number 5 (of 6 planned so far). As the chemo sessions take around 7.5 hours, I may add an update to the blog while I am sitting relaxing in the ward.

Other than this I have very little to report. I am still eating and sleeping well, I have been out on the e-bike and I have also tried a couple of very short, easy runs. On the physical health front I have two “issues” (over and above the huge, obvious one…).

Firstly, although the majority of them have been pretty painless, I have had one of my daily injections that was painful as I pushed the needle in, painful (and hard) pressing the plunger to get the Fragmin in and painful as I extracted it. This has left me with a subcutaneous lump and (as it is an anti-clotting drug) a fairly nasty looking bruise. Subsequent injections have been fine – I don’t know what went wrong with the rogue one but I am avoiding that area of my abdomen for the time being.

The other issue is a pain around my left hip, this is felt especially when I stand up from being seated. I have had something similar to this before which was caused by pressure on nerves at the base of my spine. Additional opioid painkillers have had no impact on this so I will try a combination of paracetamol and a bit of massage with a foam roller to see if this helps. I will also raise this with the chemo team so that they are aware. Hopefully it will have eased off sufficiently by tomorrow so that I can get out for another wee run…

That’s all for now, I’ll jot down a brief note on how the chemo went on a Monday update.

Another micro update, basically because nothing much has changed. This is a good thing in that I am still feeling very well, I have a good appetite and I am reasonably active, with few (if any) daytime naps.

There have been a couple of minor glitches…I have been feeling a little more “tightness” in part of my abdomen – just an occasional ache, nothing too painful. I also had a bit of an upset stomach last weekend, but I put some of this down to getting chilly at an outside concert on the Saturday evening, and a bit of a varied diet. It didn’t last very long, but it was a tad unpleasant at the time. Beyond this it has been “business as usual”.

The drugs (oral and injected) have been going smoothly and are really “routine” now. Most injections are painless with just a few being very noticeable and leaving a bruise – practice will make perfect…

Where I feel I have slipped backwards is on the exercise front. Due to a mix of circumstances, I haven’t been out on my bicycle as much as previously. This will be corrected tomorrow as I am heading out for a few miles with a local chum. I also really feel the need to start running again. For this I am keen to start a “couch to 5K” program to try and take some steps towards more fitness. This will be done very gently and I will keep the oncology team in the loop to ensure that I am not putting my health at risk. It just feels like I should be doing it.

In terms of the treatment plan, I have a blood test next Friday and if my red and white blood cells are behaving, I should get my 5th chemo on the following Monday. I also have a CT scan on Tuesday 5th.

The CT scan is a bit of a mixed blessing…it is obviously important that the effects of the treatment can be monitored but in the back of my mind I can’t forget the horrendous stress that it put my bladder through last time… However, it has to be done – how hard can it be…?

The review/follow up of the scan will be on the 14th October – whilst I am feeling fine, I have no idea what to expect from the oncology team.

Between the scan and the review, I am planning to spend a couple of days with friends up at Aviemore – this will hopefully allow me to refresh and prepare for the review.

From my last post, there were some domestic changes that were under way, so for those who have asked me, let me confirm…the shower repair is now complete and has met with universal approval.

Laura has also re-integrated into the household, and, with her back home, it feels like the family is complete. Happy days.

(I wrote this last night, but somehow managed to make an ar*e of publishing it… Events have overtaken the text, but for completeness, I am posting it now…)

Due to the number of enquiries (subtle and otherwise…) I have had regarding how I would manage without Nicola for 2 days, I thought I’d better pop a little post up to assure that I am, indeed, surviving.

Yes, it has been tough, but through a combination of Nicola’s preparation of meals in advance, and me locating the oven and microwave, it has been relatively simple…

Left with instructions to rest, I actually complied fairly well…I fitted some bits to the Bonneville (and cleaned her and her cover a bit), completed some minor domestic chores and read a little. This morning I stripped and re-built the shower 3 times (not quite working properly yet…). I also made sure that I took all pills etc on time, so it wasn’t all fun and games…

All in all, a relatively relaxed and chilled time…

…this, of course, comes to an end tomorrow when the rest of the family return home – a whole new dynamic with the three of us together for the first time since I was diagnosed…can’t wait 😊

Monday early evening and I am relaxing at home following my first “full day” chemo in around 7 or 8 weeks. The first shock to the system was getting up just after 06:30 this morning. Between holidays and general laziness, my “yokin*” time” has been gradually creeping later and later. Actually, this is also an effect of me not having the chemo pills to take – these required a fairly strict regime of timing to fit meal times around. Without the need for pill-taking 30 mins after food, I have allowed things to slip into a more lackadaisical schedule. All this changes from tonight as I will be back on the 20-odd pills a day malarkey.

I arrived at the hospital a couple of minutes early and was taken to the ward immediately. I was first in this room so had my pick of the 6 treatment chairs that were available. Far left corner for me (beside the window for a flow of fresh air, but not adjacent to the toilet door). This chair also had a fold-up table on each side which gave me plenty of space for the essential items (clutter) that accompanies me. My weight was checked (up a little from last time, hurrah!) and the cannula was inserted. The back of my left hand has been the favoured (by the nurses) location but I have noticed that I have developed some hard sections of the vein walls here. These were inspected by the nurse and the cannula was duly installed at the base of my left thumb.

As ever, this was a pretty much painless – which always surprises me when I see the size of the needle involved… With this set up, the drips were quickly operational. I lose track of what goes on, but essentially I have two small drips (a steroid and an antihistamine) which prevent me having a bad reaction to the first major infusion. This one is the immunological component of the treatment which apparently attacks the coating of the tumour, making it more susceptible to damage from the chemotherapy infusion that follows.

Once this drip is completed I get a “flush through” with a saline solution then a 30 minute rest. The first chemo drug is then attached. This is dripped in at a slow rate to start with, and then this is increased after around 20 min.

With this done there is another flush through then I have two smaller drips, one of a sodium solution, the other one is a magnesium solution. These are supplied concurrently (as the cannula has two inlet manifolds) but the sodium seemed a little reluctant to reach full flow. There was an option to try them one at a time, but this would have extended my stay by another 25 minutes or so. Instead of this “we” (the Charge Nurse) adjusted the position of the cannula slightly…a tad nippy, but it certainly got the sodium (and the internal profanities) flowing nicely.

(The second chemo drug that completes my treatment is taken in tablet form over the next 2 weeks.)

All done by 10 past 3 (a record time, especially as the ward was short-staffed today) and by 20 past I was walking through the doors to my waiting “taxi”.

Nice cuppa when I got home, then a wee snooze – I will have to get used to the earlier mornings…

No major side effects as yet but it is anticipated that the effects going forward may magnify. The only immediate effect is a feeling of pins-and-needles from the cannula area up to the elbow, but this will wear off shortly (I hope 🤞). Other than that, I will no doubt experience a similar pins-and-needles sensation if I touch anything cold in the next week or two.

That’s it, my day in a nutshell. This week will be spent getting used to the earlier starts and the regimented drug intake times. Most notably, I will be on my own on Wednesday and Thursday as Nicola is popping down to see her sister for a couple of days.

What could possibly go wrong…?

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(*”yokin” is, I believe, a doric/Aberdeenshire word which means “starting time” for a working day. I am sure it derives from the agricultural world where it refers to getting the horses ready for work i.e. putting their yokes and harnesses on. The end of the working day is “lousin’ time” when one loosens the harness and release the horse.)

Very small “update” – I had blood samples taken yesterday to see if I was in a good enough condition to have chemo on Monday…and I have no results as yet.

Still planning on being at the Queen Margaret hospital on Monday at 08:30, but I have no idea if I will be required for treatment or not.

Anyway, we spent 4 nights away this week in Northumberland in a Fabulous B&B in Low Newton by the Sea. The break was centred around rest and relaxation, with a bit of eating and drinking thrown in. Low Newton has a great pub (The Ship Inn) which was about 30 yards from the front door –

This is the view from the door of the B&B on Sunday afternoon. Not too far to walk for a beer.

We like the area a lot and the scenery never fails to impress –

As well as relaxing in the sun, we managed a 9 mile walk along the beach with our friend John and his “puppy” Hagrid. On the health front, I managed the walk fine (we did pause at the halfway point for some refreshments) and it wasn’t until the next day that my body felt it had enjoyed/endured a major workout. This feeling remains as I type…it might have been just a little too enthusiastic in my current state.

Anyway, nothing to add at the moment, fingers crossed that I’ll be sitting plumbed into my “dalek” drip machine on Monday 🤞

It will be a slightly unusual entry for this blog, but all for good reasons….

Other than the (very welcome) incremental improvements around my health – weight creeping up; appetite very good; sleeping well; fitness increasing, there is nothing to add on the treatment front. My next “treatment” will be having blood samples taken in a week which hopefully, (if my white blood cells are following the script) will be followed by a full day of chemo on Monday 13th September. This should see me back on a 3-weekly chemo cycle – what a way to start the week. My next treatment will be the fourth in a set of six, so the end of this particular set of sessions is in sight. I don’t know what the course of action will be once the full number of sessions has been completed, but I will put out a post when this is known.

So what else is there to say? There have been a couple of minor changes domestically (and another MASSIVE!) change on the way…

My super-snug day bed has been de-commissioned as I am very rarely in need of of a daytime nap. I have probably had a wee nap twice in the last 3 weeks – changed days from the 3 or 4 a day I was having a couple of months ago. I will still need to rest during the day if I have a particularly busy period, but it is easy to pop upstairs to the bedroom on these occasions.

As I have had a bit of a “holiday” from the chemo courtesy of my white blood cells, the tablet taking has reduced to just 3 a day. Latterly, taking the two dozen or so pills was not a problem but the regulated timing for taking them meant that a bit of planning was required to ensure I was sticking to the schedule. As the three I am currently taking are two painkillers and an iron tablet, I can be a little more flexible with regards to the timing. (Be assured, after my self-induced problems with the sudden stopping of the painkillers a couple of weeks ago, I AM taking ALL of the tablets, I just let the time of taking vary to suit my day – the strict schedule will be reintroduced as soon as I am back on the chemo pill regime…) You have no idea of the amount of nagging and criticism I have endured from a number of people over my uncontrolled withdrawal of medication previously…I am not sure if it was concern for my health or the joy of sticking the boot in – (I suspect it was a mix of both… 😂

Elsewhere on the domestic front I have increased the e-bike use a little and feel it is now close to being “fettled” to my requirements. I have to thank a running chum Kevin who has been a source of help and advice with the novelties of bicycle disc brakes and suspension. I am looking forward to an extended ride “cross country” on her soon.

You may recall the “fun” I had when I planned to use a motorbike to head off to a chemo session? I have to pass on a little bit of bad news – the Kawasaki “courtesy” bike has been returned to its’ owner…BUT…it has been replaced by my own machine, a (far more restrained) Triumph Bonneville. The Kawasaki felt like a guided missile on the road and was always looking to go faster. The Triumph is more relaxed on the road and is far better suited to my riding style.

In the last week or so my Dad reached a milestone and celebrated his 90th birthday. Some of the family got together to mark the occasion with a meal and it was a great evening. I have a photo of Dad and the “kids” –

Apart from using this as an opportunity to let you see my Dad, it also introduces my two lovely sisters Louise (on the left of the photo) and Kay (next to me). Don’t be fooled by their fabulous good looks and kind faces – as former nurses, they have been like the Gestapo enforcing my adherence to the medical advice. Alongside the NHS and Nicola, Kay and Louise have been with me all the way with support (and homemade cakes…) – thanks girls! x

The above activities on the domestic side of things have all been important, but will be eclipsed by a forthcoming event…Laura is coming back from Catalonia!

In two weeks time, we will have our “little girl” home. Laura has been in Catalonia since April (before my initial diagnosis) so obviously things have changed somewhat whilst she’s been away. From the outset, she has been ready to come back if we thought it was necessary, but as it was quickly apparent that I was not under threat of a rapid decline, Nicola and I were keen for her to enjoy the summer as best she could. It has been great to see Laura enjoy good times with her circle of friends out there and essentially experiencing the sort of social life that wasn’t possible here with the Covid restrictions. With the social media options available nowadays, we have enjoyed lots of photos and videos of her time abroad and have had regular video calls as well. Despite this, I have missed the “in person” interactions that take place at home and it will be great to have her back home again. Bizarrely (or possibly it is quite normal), once Laura told me the date of her return flight (or more accurately, once she arranged the pick up at the airport…) then the feeling of her being absent became more and more intense. I suspect it will be an emotional reunion – it probably would have been anyway, but this will be magnified under the circumstances. Regardless, the next two weeks may drag a little until she is back…

That’s pretty much all I have for now – I just want to pass my best wishes on to a couple of friends who are currently facing their own health challenges. I won’t mention names, but both are experiencing significant challenges and both had taken time to visit me and wish me well. My thoughts are very much with you guys, and with your families.

Quick update on my heart scan results from yesterday…but firstly, I must apologise… The figures I am about to give are accurate, but I have no idea as to what they actually refer to. I will ask for clarification next time I chat to the chemo team.

So, the normal lower level that the doctor likes to see on this measure is 50%. My previous scan had a measure of 45%, but given my general good state of health, they decided to continue with the treatment but to monitor my heart for any deterioration.

Yesterday’s measurement was 47%, showing a slight improvement over the previous one.

I am (obviously) delighted that this is getting better and suspect that my increased activity levels (more walking and the e-bike rides) have been the major factor in this. I will gradually increase my activity level, but in view of the blood clot recovery, I will take my time and increase slowly.

Onwards and upwards…

This morning’s fun included a trip to the Victoria Hospital to have another heart scan/video. This is to monitor the wall thickness of parts of my heart as there can be a degree of degradation due to the chemotherapy.

I had one of these previously so was fairly relaxed about it. It involves two injections given 30 minutes apart, the second one containing a radioactive isotope. This isotope congregates at the heart due to the action of the first injection. I have no idea how this works, but that is pretty much the same with all of drugs I am given.

Both injections were practically painless (an art I haven’t quite mastered with my own injections…) and the biggest issue was getting myself upright after the scan – this is down to age and lack of fitness, it had nothing to do with the treatment. Actually, I was left lying under the scanner for what felt like 10 minutes…this almost saw me falling asleep during the examination. The results should be shared with me tomorrow I think.

Immediately after this I had my monthly catch up call with the dietician. She was pleased with my progress, particularly with the small weight gain I have made. I am sitting at about 10.5 stone – I was a stone heavier before I was ill. I am still managing to eat very well so hopefully will gradually increase my weight a bit further.

As part of my increased exercise, I had a 10 mile e-bike ride on Sunday, in conditions which I can only describe as “monsoon”. My niece Brodie’s partner, Rob, was wanting to run 10 miles as part of his training for an upcoming half marathon. I looked at the forecast on Saturday, saw it was to be dry, so offered to “guide” him on a suitable route through the estate. Why the BBC failed to see the horrendous conditions I do not know, but as Rob was up for running it, I couldn’t really back out…

I think Rob enjoyed it…

On Monday I had a visit from a good friend Henning, who took the time, trouble and expense to fly over from Germany to see me. It was really great to see him and catch up with what is going on with his family. I think he endured more Covid tests in the last few days than I have had throughout the pandemic. When we looked at some of the old photos of us (from the mid-eighties) I think we agreed that we had both changed a little.

The other news of note is that today is our 30th wedding anniversary (I know, I know, Nicola must have the patience of a Saint…). With the hospital appointment and some other bits and pieces, we decided to go out for a celebratory meal tomorrow rather than tonight, so that will be tomorrow’s highlight.

My next (scheduled) treatment is not until the 10th of September (blood test) then chemo on the 13th, so in terms of “medical” entries, there shouldn’t be much to say over the next couple of weeks. It has been suggested that I give some more biographical details of some of my past “adventures” I may consider this (changing names as appropriate to prevent legal action…) but am not sure who would be interested in how I travelled from Dublin to Belfast in the driver’s cab of an Intercity train (and even “drove” it!) or what Alan Rickman said to me at the bar in the Ostler’s Close restaurant…maybe some things should remain secret…

So, sitting last night looking at the family diary and I see that Nicola requires to be at her work in St Andrews at about the same time as I should be at chemo. My car is in the workshop to be MOT’d (broken coil spring) so an alternative plan is required. Quick check of the weather forecast – looking dry…I’ll take the Kawasaki.

Haven’t run her for a little while, so go out, take the cover off and try her – fires up first touch…excellent! Back inside, look out the bike gear, put my day’s “stuff” in my motorbike rucksack, all set for the morning.

Get up in the morning (with plenty of time – I am not planning to rush at all on the bike). Faff about over breakfast, so need to speed myself up a bit. Rush my shower and shave, get dressed, grab my gear and head out. Bike starts with the first touch of the button, I let it warm up a bit, reduce the choke (younger readers may need to look that reference up…) and off I go. Partly because I am being cautious and partly because of the exhaust “burble”, I take it very easy as I turn on to the High Street…and stall. (“Oh drat!” I thought, “you silly sausage” – or something along those lines). Try to re-start the engine, only succeed in flooding it (another old school motoring reference to bamboozle the young ‘uns). Try various ways to to get it to fire up, but am now at risk of flattening the battery. Push the behemoth to a parking space on the High Street and head home as fast as I could, removing my crash helmet, gloves, buff and jacket in a vain attempt to keep my heart rate and body temperature normal(-ish). I call Nicola (who is naturally concerned to see a call from me as the bike doesn’t have hands-free…) and she has the car ready for me to take and prepares to re-plan her entire morning to accommodate my error.

With the blue badge, parking at the hospital is an absolute doddle and I actually just get to the waiting room on the stroke of half-past eight (my appointment time) and am called through a minute later. Surprisingly, my heart rate and blood pressure was normal so I prepared to spend 3.5 hours or so being treated.

Apart from a delay in getting the delivery of the day’s chemo treatments, all was very straightforward and I read or rested throughout the morning. Relaxation was provided in the form of a new book from Laura and a coffee/biscuits combo prepared by Nicola. All in all, remarkably chilled given the hassle of the earlier part of the day.

Once the treatment was completed, I headed home to lunch, (freshly prepared – the quality of care I am receiving at the hospitals and at home is top class…). After a brief rest, I grabbed my motorbike gear and headed down to the centre of the village to try the bike again. It started fairly easily and I took it for a wee run to get it up to a normal temperature and to assess the starting from hot. The bike started immediately whenever I tried so I can only assume that I tried to run it with too little choke in the morning, then flooded it with my starting attempts. I am beginning to see why most modern bikes have fuel injection…

Getting back to the treatment…today’s infusion went well and I will be having blood tests on Tuesday next week to see if the chemo portion of the medication can go ahead on Friday. In addition, I have a heart scan on the Tuesday along with a discussion with the dietician. There appears to be no end to the resources that the NHS is applying to me, and I am very grateful that this is the case.

So, let’s see what next week brings…bound to less stressful than this week, surely…?

Avid followers will know that my chemo planned for last Friday was cancelled as my white blood cell level was too low. This essentially gave me another “week off” from the higher-volume pill taking, so I wasn’t too bothered by it.

Roll on a week and my next blood test took place yesterday (they are normally on a Tuesday but this one was Wednesday to allow another day’s recovery). Unfortunately, the results today were also too low.

I haven’t failed this number of tests since I was at university…

All is not lost however. I will be attending the chemo ward tomorrow morning and will receive the trastuzumab component in order to maintain the benefits this has given. It is likely that I will move on to a 3-weekly cycle of trastuzumab infusions without the standard chemo drugs once the remaining 3 cycles of the usual treatment have been completed. This will probably continue (along with an occasional CT scan) until my next review with the oncologist which is due in mid-October.

Everything else continues as normal…I am taking the painkillers (no more sudden cessation/withdrawal symptoms), the daily self-injection is old hat now (I barely flinch or cry as I do them) and I am feeling pretty good. I am napping a lot less and am still eating well (and have gained a little weight).

Social visits are still a feature and the last two weeks has seen us catch up with some friends that we haven’t seen in a very long time, which has been great. I have had a couple of brisk walks and also had a couple of cycle rides. From these I think I can safely say that the treatment for the blood clots has been successful, so much so that I am planning a longer bike trip to further regain some normality. Who knows, I may even try a little run at some point…?

All this and we have a few days away planned for early September…life is good.

After a quick read of today’s post Nicola pointed out that I had omitted part of the discussion with the doctor. It’s not particularly significant (as far as I could make out) but I did plan to give an accurate picture of how things were progressing in the blog…

You may recall that I had a rather nifty video analysis of my heart a few weeks ago. This was brought up today as the oncologist advised that the weakening of some of the heart muscle was considered to be borderline problematic. Their take on this was that the test itself can give results that are prone to a degree of vagueness, so they want to repeat the test (with a possibility of adding an ultrasound examination as well). The weakening is a known side effect of the chemo so there may be a further “fine tuning” of the medication going forward.

One of the other “tweaks” that was covered was my daily anticoagulant injection. In a couple of weeks the strength of the Fragmin will be reduced a little as the blood clots will have been reduced, so the treatment will be more focused on maintaining the healthy condition. I was told that I would be taking this daily injection for my “lifetime” (but I resisted the temptation to request a 30 year’s supply quantity…)

I won’t bore you with the slight slap on the wrist I was given for knackering myself pushing the motorbike around the driveway when my lung function was compromised, or the (slightly firmer) slap for stopping my painkillers (these are to continue unchanged).

Other than these additions life will carry on as normal for the time being. The can has been kicked (a little) further down the road.

As ever, the scale and thoroughness of the care I have been lucky enough to receive has been mind-blowing.

So, cutting directly to the chase…

Good meeting with the oncologist this morning. The oesophageal tumour has shrunk a little – this is apparently “unusual” so early into the chemo regime, and is a sign that the chemo is having a positive effect. The tumours on my liver have shrunk as well (I had guessed this was the case as my stomach capacity is back to normal), and the tumour in the upper reaches of my spine has pretty much gone (and left a little fracture behind). The lower spine one is still there (I think – there is a lot to process at these meetings) and there was no mention of the ones in the lining of my abdomen. It is looking likely that the dosage of the remaining three sessions may be reduced – these latter sessions get tougher as any side effects are cumulative. I have a 3-part treatment, two of these are the standard chemo drugs and the third one is a drug specifically targeted at the oesophagus tumour to neutralise it’s potential for growth. Once the remaining three sessions are complete it is possible that I will continue with the 3-weekly chemo treatment, but it will be reduced to this third component only. Thereafter it will be a case of having a CT scan every couple of months to monitor the tumour. There is a possibility that it may mutate and develop a resistance to the treatment, so we might start again with a different cocktail of drugs. The bottom line is, based on the average response to the treatment I have had, this round of chemo will add 3+ months on to the timeline, which takes me to May next year. May not sound great but it’s better than the “November this year” I was looking at originally. Again, the times are estimates based on averages – the reality could differ in either direction.

On the sub-optimal side, my neuts (see last night’s post) have not improved enough for me to have chemo tomorrow so that will be rescheduled to next Friday instead. Not a big issue, but mildly disappointing as it will push the treatment out into October rather than finishing in September.

I have also managed to put on some weight (hardly surprising given the amount of food I am taking on board currently) so that is another positive.

Given the relief and cheering effect of the good news, we headed out to lunch in Perth after the meeting…pushing the boat out somewhat, we each managed to shift 3 courses…

This was the starter (and it was excellent!)

Now back home feeling relaxed and content, we can now plan a little further into the future. Good times.

Typically, if everything is going well and in a straightforward manner, it’s not my life that is being referred to…

Regular readers will be aware that I am due to see my oncologist tomorrow (for the first review since the chemo started) and should be enjoying my fourth chemo session on Friday. As a precursor to the chemo I have a blood test a couple of days before, just to check that everything is tickety-boo for Friday’s treatment. Generally, these tests have been used to confirm that my red blood cell count is good and that no more blood transfusions are required. Unfortunately, this week’s tests have thrown up a new twist.

It appears that I am now a little low with my neutrophil count. No idea what neutrophils are? Me neither.

OK, I didn’t know I had such things as neutrophils, and didn’t have a clue as to how significant this was. It appears that they are a major component of the white blood cells, so form part of my immune system. A quick review of my chemo notes shows that the “neuts” measure at my first session was 7.4, at the second it was 2.27 and at the last one it was 2.18. These numbers mean nothing to me (apart from an obvious downward trend), but it is common for chemotherapy to adversely affect these neutrophils. Whilst this isn’t (currently) any cause for concern, it does mean that my planned session for Friday is unlikely to proceed. I am obviously pretty keen that my programme of treatment carries on without delay, but not if it carries additional risk of picking up some infection. It may just require a little more time for my body to produce more neuts and I will get back on track – with this in mind I will be having a further blood sample taken tomorrow to re-test the neuts, just in case the extra couple of days have been enough to scrape over the line for this week’s chemo to go ahead 🤞

At least it helps take my mind off the meeting with the oncologist…

Not much to report on the health front at the moment. After the “excitement” of two hospital visits over last weekend, the past week has been (thankfully) relatively quiet. The chemo pill taking stopped for the “week off” that each cycle has, which means that I will have another chemo session in Dunfermline on Friday this coming week.

Whilst this is my week off in terms of the pills, it is a busy week in that it includes blood tests on Tuesday and a meeting with the oncologist (Dr Christie) on Thursday. I have to admit that I am slightly nervous about the meeting. This will be our first meeting since I had my scan two weeks ago so I am expecting to hear what (if any) progress the chemo has had on the tumour. I know my liver swelling has reduced (8 weeks ago I struggled to eat a slice of toast before my stomach gave me an “I’m full” feeling due to the squeeze being exerted by my liver – now I am eating pretty much normally, and don’t seem to have a finite capacity). That indicates to me that there has been a change to at least one of the secondary cancer sites. Whether or not this can be extrapolated to an effect on the prime tumour remains to be seen.

Any degree of optimism my self-diagnosis starts to develop is quickly snuffed out by the fear of the unknown in terms of what the experts will say. At this point in time, Thursday seems to be a long way away…

The other secondary sites which were causing me some discomfort are the ones in my spine. From very early on in the treatment there was a focus on pain management, and the drugs I take for these have worked very well. In fact, the pain control is so good that I began to wonder if there was actually still any inherent pain in my spine at all. This had been circling in my head for a few days when I had a brilliant idea. Why don’t I stop taking the painkillers for a couple of days and see if the pain resurfaces? If it doesn’t, I can tell the doctor on Thursday and possibly reduce the pill requirements further.

A brilliant idea, what could possibly go wrong…??

The good news is that the internet is a ready source of information regarding the potential effects of the abrupt stopping of opioid drugs:-

• Runny nose, watery eyes and yawning
• Restlessness or anxiety
• Irritability or mood disturbances
• Increased pain
• Goose bumps on the skin, chills or sweating
• Stomach cramps
• Nausea, vomiting or diarrhea
• Muscle cramping or aches and joint pain
• Tremors or muscle twitching
• Rapid heart rate
• Blood pressure changes
• Trouble sleeping
• Thoughts of suicide

The bad news is that I didn’t bother to research this on the internet until after I had missed a couple of tablets…

Thankfully, the side effects were pretty much limited to chills, sweating, stomach cramps and trouble sleeping (and for a while I was VERY reluctant to be too far from the toilet)

Suffice to say I will not be adjusting any of my medication in future unless advised by the professionals…

So I will get an update from the oncology team on Thursday – at some point after that I will pop a post here to let any interested parties keep abreast of progress.

I have just remembered that I had planned to give an update following on from the weekend…

The last entry mentioned that I would be self-injecting for the next few weeks to counteract the blood clots in my lungs. The first of these was done with the assistance of a nurse at the Vic on Saturday night, after which Nicola took me home and I headed off to bed knackered.

Possibly due to the variation in my eating/drug taking schedule on Saturday night (I ended up taking my evening cancer meds on an empty stomach at the Vic), my stomach was a bit “delicate” throughout Sunday morning and afternoon. Despite this, I carried on with the quest of taking in calories as best I could.

Nicola takes her mum for a weekly food shop on Sunday mornings and while she was away I decided to unload the dishwasher. This is by no means a difficult or exhausting task, however, as I straightened up with the final dishes, I felt slight chest pains. I will stress that these were very dull internal aches on both sides of my chest, and not sharp stabbing pains, but as I haven’t experienced this previously I elected to sit down and “recover” for a little while. After about 20 minutes, the slight aches disappeared altogether.

Nicola came home whilst I was resting and when I told her about the episode I was reminded that I am supposed to contact a “cancer hotline” if I experience ANY changes to my normal status. I talked to the team and they asked me to go to A&E for a quick check…

Back to the Vic again (I will have a named parking space there at this rate) and I had a quick check up and was given the all clear. The doctor explained that it was most likely that the change of posture from bending to upright would have altered the (already compromised) blood flow in the clot-affected areas of my lungs, and this change had manifested itself as the pains I had experienced.

Nicola drove us home and it was agreed that I would take it easy for the rest of the day.

Now, you may recall that I had a short phase where the prospect of having 10 or 12 pills to take built up in my head to the extent that I actually made myself have problems taking the bloody things. I overcame this in part by breaking the job into 4 “swallows”…

…and partly by acting my age.

The thought of self-injecting was beginning to worm its’ way into my head as Sunday evening approached. I know people (and am indirectly aware of many more) who have had to do this from a very young age, and none of them make a song and dance about it. This line of logic does not, however, stop my rampant trepidation from turning what is a micro-molehill into Mont Blanc.

Some of the logic that I could apply and that actually helped calm the mental tsunami of dread that my mind was brewing was:-

1. If you don’t do it, it could kill you
2. No-one else will do it for you
3. Nicola did the same thing throughout the IVF treatment and never complained once

Anyway, it had to be done – and had to be done about the same time each day following Saturday’s initial one.

Those who know me fairly well will be aware of some common (and no doubt, irritating) “motivational” sayings that I spout. As with most people who chuck out such pearls of wisdom, the last thing I want is to hear them being thrown at me, however a couple of them seemed appropriate. “How hard can it be?” is my blunt approach to (non-personal) problems, along with “MTFUP” which is an abbreviation of “Man up, Princess” (well, it’s near enough… 😉

Suitably motivated, I prepped my pills and unwrapped the syringe. By this point (in my head) the pills were a minor sideshow, so I revised the intake strategy to a more efficient format:-

This “single shot” was enabled due to the removal of 6 pills from the daily intake plan. With the tablets dealt with, it was time for the injection.

I have probably had more injections administered in the last three months than I have had in the previous 60 years, but it was only when settling down to do my first one that the following train of thought developed…

When a healthcare professional is about to insert a hypodermic or a cannula, they always say ‘you may feel a little scratch”. I am convinced that, a number of years ago, this would have been “you may feel a little prick”. This change of script means it is no longer possible to use the age-old response (delivered in a Kenneth Williams voice) – “it wouldn’t be the first time, oooh Matron!”

However, I digress (slightly)…

The method of administration I was shown on Saturday was to grab a roll of skin/fat on the belly, pinch it a little then just push the needle in.
Incidentally, I did get them to check if it would be a problem if I had a solid muscle 6-pack. This obviously worried them so they checked my scan – it appears that I have a 1-pack and it is composed almost entirely of fatty tissue. Phew, problem avoided…

As an utter anticlimax, it was as simple as that. Pinch, press in the needle and (slowly!) press down the piston of the syringe. No fuss, no (or very little) drama, a pain-free execution. Which is good news as it is likely that I will be doing this every day going forward…

Following my CT scan on Monday, and with a slight feeling of breathlessness, I decided (or was told) to have a quiet week with more napping than I had done lately.

Accordingly, I had a visit from my brother-in-law Dave on Wednesday for our (now customary) weekly coffee and cake meeting. On Friday I had lunch with another friend, which included a short walk in Falkland Estate with her lovely dogs. Apart from these gentle pastimes, the week was easy and relaxed.

As I was aware of a slightly increased level of breathlessness I made sure that any walks were both short and slow, especially on any uphill sections. Additionally, I had a couple of afternoon naps as part of the “recovery” from the excitement of having visitors. Despite these precautions, there was still a niggling feeling regarding the shortness of breath. I mentioned it to the Nurse Practitioner in the Oncology team and we agreed that I would monitor the situation and discuss it again next week if it was still evident.

Normally I would go for a bike ride with my buddy Bob on the Sunday, but he visited today (Saturday) and we were both feeling the effects of last weekend’s outing so decided to cancel any plans for tomorrow. When Bob left I decided (unprompted!) to have a wee nap…

My peaceful slumber was interrupted by a call from the Chemo team. Apparently, the scan from Monday evening showed signs of blood clots in both of my lungs. This is not uncommon with the treatment I am on but it required further investigation to decide how best to treat it going forward. There is also a chance that clotting could be present elsewhere, with the heart being of particular interest in the assessment. As a result, I was required to attend hospital for blood tests and additional treatment. I was advised that this could extend into an overnight stay for observation, so I should pack a bag, just in case.

Moments later I was sitting in the car being driven to the Vic in Kirkcaldy to get the testing underway as soon as possible. I waved goodbye to Nicola just after 5pm and headed to the ward for testing. With the paperwork completed, I had a (completely painless) Covid test then prepared to have 4 blood samples taken. The nurse administering the Covid test was obviously well-practiced as this was by far the least painful Covid test I’ve had. Sadly, the bloods were slightly less forgiving as my left arm “dried up” after the first two test tubes were filled which meant he had to repeat the exercise on my right arm. This was followed by an ECG.

19:20 – Doctor has had a chat. The clots were detected by a radiologist in London (apparently these scan results are out-sourced as required to other hospitals that have capacity). It looks likely that I will have my current tablet regime modified slightly (6 fewer tablets per day, hurrah!) while they assess the anticoagulant treatment effectiveness. ECG is normal as are my other vital signs. Just need to hear what format the forward treatment is and (hopefully) will be sent home tonight…

19:45 – shift change so another doctor has joined the party. It is now looking likely that the anticoagulant will be administered by injection for the next few days at least. This is the lower risk option as the presence in the body can be modified if I have a bad reaction. When I say “administered by injection” I think they mean “administered by SELF injection” 💉😳 Hypodermic lessons are due to start shortly…

On that somewhat less than cheery thought, I will stop the blog and provide an update tomorrow…

No treatment update, but instead a couple of lines about Maggie’s in Fife.

I have been aware of Maggie’s and the work they do with cancer patients, survivors and their families, but until today I have not had any direct contact. In fact they have already supported us with assistance to get my “blue badge” and some of the financial support that we are we are entitled to, and Nicola has been along in person, but I had been a stranger until this morning.

Whilst the premise of the support works in terms of a “drop in” type of facility, I made an appointment to make sure that I was expected and that there was space available for any form of induction.

As you would expect, the team there were lovely and the conversation just flowed this way and that, as thoughts drifted in. There were no Earth-shattering relevations, no hint of a script or directed discussion, simply a chat (with a cup of tea and a chocolate biscuit)…

The focus going forward will be on whether or not I want to try any of their group activities, or if I simply want to use them as an informed source of information or support. Their approach is so flexible that I could envisage Nicola and I going along together under some circumstances, or me just popping in for more tea and biscuits and the mood takes me.

One of the potential spin-offs from this may be access to a creative writing course…who knows, I may actually end up writing something that people enjoy reading…

Yesterday evening saw the appointment for my second CT scan. This is a very straightforward procedure that simply requires me to have a cannula inserted (inner elbow, usually), lie down on the bed of the scanner, hold breath for scan 1, pause while “dye” is injected, hold breath for scan 2, disconnect from the plumbing, cannula out and head off home. 20 to 30 minutes.

Simples.

But…

…it also requires the intake of a litre of water within the 60 minutes prior to the treatment. Now a litre of water isn’t a huge amount, but I also have to stop eating 2 hours in advance of the scan. Add to this a bottle consumed following a fish and chips lunch, and a quantity used to swallow the 2pm tablets, and my bladder was VERY aware of carrying an “abnormal load”.

Nicola drove me to the Vic in Kirkcaldy (only a half hour drive) and by the time I had booked into the MRI/CT suite, it was a couple of minutes to 6. A few minutes later I was invited into the scanner room, details checked and (having advised that my bladder was getting close to critical), we started. Having now been perforated more often than your average teabag, I tend to gloss over injections and cannula insertions/removals as a bit of a non-event; they’re generally painless and don’t even pause any on-going conversation. Not so with the first attempt last night…it went in no problem, but the flow wasn’t up to the level required. Left arm dumped, re-equip with fresh cannula and round to right arm. Only a few extra minutes, but by now I felt like my bladder had been swapped with a watermelon… Thankfully, the second attempt went as normal and I could settle on the bed of the scanner, albeit with 100% focus on controlling any unwanted discharge.

1st scan, probably less than a minute, no problem – phew!

2nd scan required the dye injection to be completed before the scan commenced. Painless injection of fluid along with the description that I had forgotten from the first time I had a CT scan – “you’ll feel a bit of a warm sensation spreading from the arm, and this will also give you the sensation that you are urinating – but you won’t be…”!! Oh really!

I now have my legs (metaphorically) crossed, my eyes screwed shut and an absolute concentration on whatever muscle(s) operate the bladder flow. Another minute or so and the second scan is over. I am close to the point of yanking the cannula out myself and sprinting down the corridor to the toilet, but the calm, reassuring, professional and exceedingly prompt action of the nurse had me on the way to relief in a matter of seconds – I reckon they’ve done this before.

If continuous urine streaming was an Olympic event, I think I would have been up for a gold medal.

Composure (and dignity) intact, it was back to the suite to get the cannula removed and (almost like walking on air), back to the car.

So, results from the scan will be discussed with the oncologist on the 12th of August and we will see what the status is then.

As is the current norm, I am eating and sleeping well, I have increased my exercise level (slightly) and my daily naps have reduced. Slight breathlessness is still apparent occasionally, but the pressure in my abdomen and my back pains are well under control with the medication.

We are having good days (a bit too warm in the recent sun) and day to day life is very good. The only minor downside is that I appear to be capable of performing some the “light domestic duties” that were mentioned in the dim and distant past of the first meeting with the oncologist – this did seem to be a dramatically optimistic view back then, but reality now bites…my turn to make the morning coffee…

Another round of chemo yesterday, faultlessly executed by the team at Queen Margaret Hospital in Dunfermline. The turnaround time from being dropped off and picked up was around 8 hours – I still can’t get over how tiring it is sitting doing nothing in particular.

The whole process of getting the cannula inserted and the numerous drip bags (7 in total, I think) was pain-free and efficient.

On a more mundane level, this was an opportunity to try out a new thermos flask that I bought especially for the chemo. It is just the right volume for my usual morning coffee (500ml) and, more importantly, it is easily opened when one hand is restricted by the plumbing and it pours very well with no drips. I also managed to leave my mobile in the car (doh!) but had my tablet so could email Nicola to keep her abreast of the timings.

In another break with “tradition”, I took a couple of boxes of strawberry tarts in for the team. These were gratefully received, and a specific request was made for me to pass their thanks on to Nicola, as they knew it was her idea…it was indeed Nicola’s idea – I wonder how they knew?

With no mobile to while away the time I fired up the Kindle and caught up with some reading. The first book was “Half Safe” which I had seen mentioned in a Twitter post. It is the story of a husband and wife team who crossed the Atlantic in a WWII amphibious Jeep (a Ford-built design that was cancelled after a few hundred were made as they were so unreliable and ineffective…) The account of the crossing (and subsequent overland back to Australia was relatively brief but made harrowing reading. Suffice to say that they both survived the ordeal, but the stresses involved caused a decline in health for both and sadly the disintegration of their marriage. Not an uplifting tale of exciting adventure and one of the few such accounts that left me wondering “why in God’s name would you even contemplate this in the first place”. As I said, it was fairly short – any longer and I think I would have given up, as it was a pretty depressing read.

The second book was far more uplifting. “Broken” by Ally Beavan. Ally is a well-known Scottish ultra runner and the book covers a number of “fastest know time (or FKT) attempts that were completed last summer. Due to the pandemic, almost all race events were cancelled. In the brief pockets of outdoor access that were available, a number of athletes took on a range of long distance runs to establish an FKT. Some of the records have been held for many years as the usual race calendars prevent athletes from having the time to run – some routes require multiple days to complete – and to assemble support crews, if required. Some routes also include climbing mountains (one was the fastest completion of all 282 Munros – 31 days, 23 hours and 2 minutes by Donnie Campbell. He also either walked, cycled or kayaked in between the Munros, so was self-powered.)

Sometimes it can be bittersweet reading about the accomplishments of others when I am not able to run, and even walking requires a bit of planning with regards to the distance, heat and hills that may be encountered. On balance, I still enjoy the sport, albeit vicariously at the moment. This may change and I will close my Strava account (Strava is an online site where you can record your runs/cycles etc for friends to view and comment.) when the balance shifts too far into the “black”. I am getting out on my e-bike now, so that had brought me a new lease of life with regards to outdoor pursuits and allows me to keep up my Strava activities, although it does feel like cheating with the motor…

Another powered bike has entered into the fold here. My car is at a friend’s workshop for a couple of minor jobs. I have used this as an excuse to borrow his “courtesy bike”

Somewhat faster than the e-bike (and the cars), and the first outing had my heartbeat up at where it peaked on my last e-bike ride. It won’t have too many miles racked up by me, but it is an absolute blast. In its’ day, it was allegedly good for around 177 mph – I can honestly confirm that it will hit 70 mph with ease…I have no plans to find out about the other 107 it has tucked away.

So, chemo 3 session completed. I was a little more tired after the treatment yesterday but chicken pie, peas and new potatoes (slathered in butter, of course) helped revive me. Such is the ease of the sessions that I am forgetting some of the immediate after effects. If I touch anything cold, I get pins and needles, and have to rinse my hands in hot water to stop the tingling. This means I have to wait for the water to heat up before putting my hands in the flow. It only takes a couple of mishaps to remind me… Butter out of fridge ooh ahh pins and needles, tap on, hands in, ooh ahh wait for the water to heat up… I will get the hang of of it by tomorrow morning. I also have a slightly husky voice – this has happened with previous sessions, I also lose a bit of tongue control so fumble my words a little. My face is also a bit red – not quite sunburn pink, but close. These will all calm down over the next week or so, in time for me to forget by the next chemo appointment. On the more positive side, my hair is still very much present (and I don’t see any of the blonde that was speculated about last time.) Appetite is good, stamina is improving slowly, I think. Tomorrow I am going out for a cycle ride with the guys I was with last weekend and I will try to get out a couple of times during the week as well.

Next medical date in the diary is for a CT scan on Monday evening – this will be reviewed and discussed with us around the 12th of August. Fingers crossed that the improvement that I feel will translate into a more extended timeline…

Just a note to say that my chemo has moved to Friday this week…nothing untoward, looks like an admin error in the letter I have giving me the dates into September.

“Proper” update sometime after the session on Friday…

Hi all. I have had a couple of comments from friends who had noticed a bit of a gap between posts. Thankfully, no-one thought I had popped off permanently, so that was nice.

As I said in my previous post, there is nothing much to say about my health situation…all is pretty much as before – eating, sleeping and feeling well, perhaps a little more energy than before, but it is hard to tell, so it could be my imagination.

Since my last update, we have been away for a couple of nights at a B&B in Aboyne. Nicola tends to do the research regarding places for us to stay, so I am the one who gets a pleasant surprise when we arrive at the chosen destination. As with previous selections, Lys-Na-Greyne did not disappoint. The room was outstanding, the food excellent and the views from the terrace and rooms were lovely.

For the first evening, we took dinner on the terrace, basking in the evening sun. Dinner the next night was at our favourite restaurant in Aboyne, the Boat Inn. The fish and chips (with additional onion rings) were excellent. We had a couple of short trips out and about locally, but the emphasis was on relaxing and taking things easy.

The drive back on Saturday was good and included a detour to visit my Dad in Dundee on the way home. He was in good form and it was good to see him.

Sunday saw me out on the new e-bike with my local pal Bob Stewart and one of his chums. The route was longer (and less hilly) than my first outing, and included coffee and cake at the Pillars (local cafe). Much better performance from me with regards to the use of the gears and battery settings (the bike still out-performs me significantly). I need to get used to the downhill handling (it’s not as twitchy as my old bike) and the difference in response to direction changes (it’s longer than my old bike and needs a bit more space to manoeuvre on twisty bits). Great fun.

With my current general feeling of good health it is very easy to forget that I have a terminal illness. This was, however, brought back into focus with my pre-chemo blood tests on Monday. I still managed to squeeze in a coffee/cake with family afterwards so was back on the usual mindset very quickly.

In another admission or acceptance of the change to my health, Nicola drove her sister to the airport at 04:00 this morning. Historically, airport runs were “my” job, but Nicola did both legs this time. It’s a small thing, but is another reminder of the situation I am in.

This morning saw me through in St Andrews for my (almost weekly) catch up with my brother-in-law Dave. Great company as ever, and today was his turn to pay for refreshments – result!

So that’s an update on where I am just now, just need to prepare for my next session on Thursday. When I say “prepare”, what this actually involves is picking the filling for my sarnies and making sure that my tablet and radio are charged. That’s how much prep is required.

I will post an update after the session on Thursday – it is a beautiful afternoon here as I lie on the day-bed, so I am going head out on the bike for a wee dander…

With my physical health remaining on a level (or even slightly increasing plane), there is nothing new to post relating to this. Instead of a breakdown of the treatment details or timetable for the next stages, I thought that I would “pad out” the blog with some of the random bits and bobs that I have come across over the last few weeks. These are all personal observations and, whilst terribly dull and uninteresting, they do cross my mind from time to time. These are in no particular order and I jot them down as they pop into my head…

Hair loss – Early days, but so far I have not really experienced hair loss during the treatment. I know that there are lots of different types of treatment and everyone is an individual, but it seems to be that this would normally be evident by this point. (I have now probably tempted fate and will experience billiard ball degree of hair loss overnight…) I do think my hair may have thinned out slightly but, as it doesn’t show in the shower drain trap or on my shoulders throughout the day, I think this is not significant. Indeed, as it had become such a chore to wash and dry my flowing locks after a shower, I decided to get my hair cut today. My barber (cheers Scott) thought my hair MAY have thinned a little (but it has been some weeks since he last saw me) – rather more surprisingly, he thinks it has shifted from the silver of old to have more of a blonde colouring. I haven’t discussed this with Nicola yet, so she may well have a different opinion. I also have some ex colleagues from Highland Spring visiting me tomorrow and I know I can count on them for an unbiased (if brutally honest) opinion…

Taste changes – In general I currently tend to have a bit of a metallic taste in my mouth. This may be due to the iron tablets I take, but it is pretty much always there in the background. Beyond this, I believe my sense of taste has shifted slightly during the treatment. Now I did contract Covid last year and I have been of the opinion that this dulled my sense of taste to a degree. I now find that some of my “standard” food and drink items have been affected. Most obvious amongst these is coffee. For years I have taken coffee white with no sugar. If I take it like that now, it leaves me with a “burnt” aftertaste. Pop a couple of sugars in and it reverts to tasting like coffee. Additionally, I would almost always take an extra shot – now I tend to stick with the standard offering (with sugar). My taste in drinks has seen quite a shift (and this is a variable). For a while, I would add diluting flavours to make water more appealing. Now I find water alone is preferred (Highland Spring, of course – I now get an aftertaste from tap water). I have no desire to drink alcohol – partly this is due to a physical reaction my body has to cold drinks post-chemo… I hope this will change… And who would ever have guessed that I would enjoy a (room temperature) elderflower presse, slightly sparkling? Some other items affected like this are crisp flavours. I now find cheese and onion crisps unappealing, heading more towards ready salted or salt and vinegar. Texture now plays a part – Mackies ready salted are especially nice, Co-op salt and vinegar top the preferred brand for that flavour. Pringles are becoming less desirable but prawn crackers or poppadom style crisps are heading up the table. For those who weren’t aware of my crisp preferences previously, it was generally anything and everything, in large volumes… My current intake volume has probably been reduced to “normal”, down from “sheer gluttony”.

Fatigue – I know I go on about this, but the drop in muscle mass has been hard to get used to. Apart from the revolting image that my current physiology presents (boney, sagging, wrinkled skin), loss of strength (particularly in my upper body) is hard to live with. It is no exaggeration to say that my arms get tired washing my hair (honestly!) and drying it afterwards is a tiring chore. (This should be easier tomorrow after today’s haircut). Any task that involves using my arms in any meaningful manner requires me to sit and recover. My legs have also lost muscle, but to a lesser extent. The fact that I can have 3 or 4 hours sleep during the day and sleep well all night is a change from the 6 hours-ish total that was enough for me previously. Getting some form of balance between “rest for recovery” and “trying to build up some of the lost strength” will be tricky and I will allow this to guided by the Oncology team. I have already shown that my own understanding of my limits and the real-world limits that actually apply do not align, so it makes sense to see what the professionals say.

MYTH 1 – Being positive – A number of people have commented on how positive I appear to be or how well I/we are coping with this shitty situation. Whilst I don’t want to project a false image of absolute optimism, I also don’t want to conceal that it isn’t all sweetness and light. At the moment I don’t have an “endpoint” from the oncologist, or indeed a picture of what the situation will be as this endpoint approaches. I am certainly not ignoring the inevitable – I simply don’t have a handle on when it will begin to impact on the quality of life I am currently enjoying. We have considered aspects of the time left and some of the things that we have to sort out in advance. These activities will step up when the available window to complete them is known (actually, I hope to have most of the “admin” side completed in the next couple of weeks). Most of the time I am practically able to “compartmentalise” the “time running out” thoughts so that I can enjoy these days of relative fitness and while I am capable of leading a relatively normal life. This doesn’t mean there aren’t tears, there are and they can be solo or communal. Once done, we can pick up and carry on. In this situation, I am not sure what other options are available to us. Rather than “positive” I think I am currently “pragmatic” – that’s how it feels on the inside.

MYTH 2 – Fighting cancer – Again, I get the occasional comment regarding “fighting” the cancer and “being strong” so that I can “beat” it. Just to be absolutely clear…the only fight going on here is between a tumour and an array of modern drugs. I turn up, sit down, get treated then go home and take a cocktail of drugs. That’s it. No positive mental attitude, no kicking its’ butt. I sit back and let the drugs do what they can. This brings me to my African proverb… “When two elephants wrestle, it is the grass that suffers” – I know who the grass is in this analogy…

As anyone who follows me on Facebook will be aware, I took the (for me, significant) step of taking a bicycle ride in the local estate yesterday. This had a number of levels of importance for me – it represents a (modest) return to independent travelling; it allows me to visit the local area that I previously spent many hours running around and it is a step along the road to changing my outlook from “what was I able to do previously” to “what CAN I do going forward”. The latter point is probably a good indicator of a move towards a more positive mindset. It is hard not to compare my previous fitness level with the reduced level I currently have, and this is exacerbated by the increased fatigue that the simplest of activities seems to deliver. Anything that can re-focus me on the things that I am capable of is welcome – particularly if it can deliver some of the positives that I enjoyed in the “old” days.

So, with some trepidation, yesterday I took my new bike out for its’ maiden run. I had given it a very brief test ride in the car park at the bike shop, but that was only a few minutes on a smooth surface. My house is on a small incline (actually, it used to be a very small incline, but since becoming unwell the steepness seems to have increased dramatically…) – starting off downhill gave me a chance to get comfortable before I had to apply any effort to the pedals. Any concerns that I had were quickly eliminated and I was soon enjoying the speed and comfort of wheeling through the village. Admittedly, I need to work on my gear changing and route selection, but it was a fantastic feeling to be rushing along to the estate and to hit the trails I have run on for the last few years. For those who know the area, I headed up to the Tyndall Bruce monument (a well-known local landmark) where I paused for a couple of photos.

As this was the highest point of the short route, it was downhill almost all of the way home. All in all, it was a very successful first trip. My next ride will be flatter and longer, giving me the opportunity to practice with the power levels and gear changing, as well as making sure that the “fit” of the bike is correct.

It’s not all sunny and bright, however… Having lost a stone and a half of muscle over the last few weeks, and having not used my remaining muscles for pedalling for a similar period, today my body is providing constant reminders that it did something unusual yesterday – still, each twinge does generate a smile…

As I am currently very much in a “same old, same old…” position, there is not a lot of information available for an update, but given that I did allude to a quick update at the end of the last post, I thought I’d better get a line or two out.

Health-wise, the situation hasn’t altered much from the status after the last chemo session. I have experienced very minimal side effects; eating and sleeping habits are relatively “normal” – I am still cramming in the calories and my weight is fairly static. Given the hiccup last time where my treatment was delayed to allow for a re-formulation of the chemo fluid to accommodate my weight loss, I am monitoring my weight to make sure I can flag any significant change well in advance of taking my seat for the next dose. Taking the tablets has proven to be fairly easy this time round (big boy pants on…) and, other than the general fatigue and loss of general body mass, there is little to show (externally) that I am in any way unwell.

Managing the tiredness is an art that Nicola is far better tuned into than I am. Heading to the oncology ward last Friday, I took the stairs rather than the lift. The height of the stair risers is fairly low, so I thought I’d just “hop” up them two at a time. Three steps later I was holding on to the bannister catching my breath – funny, it didn’t look that difficult to my eyes… As I am still blessed with family and friends visiting, we plan our days around any activities and allow for a decent rest. This allows me to walk with friends into the village to a café, pause for a nice lunch and walk back home without being too tired to engage in conversation. We did this with my good friend John (and his sister Carolyn) yesterday, and it worked well. The walk was enhanced by the presence of John’s Bernese Mountain Dog puppy Hagrid – what a lovely, canny nature he has.

Immediately after the walk however, and it was off to my “day bed” for a good snooze. That left me bright for the evening and still allowed for a good night’s sleep. Knowing the degree of intensity of upcoming events means that Nicola can “advise” me when to rest which I accept is an important step to my recuperation and day-to-day health management.

Today had the double excitement of a new test at the hospital, and another meeting with a friend. It appears that there can be an undesirable side effect of chemo which can affect the heart function (or ventricle function, to be more exact). The investigation of this is fascinating… Firstly, I received an injection of a fluid which “targets” the direction taken by a subsequent injection. This second injection contains a radioactive isotope which allows the heart function to be captured for analysis to ensure that all is well. Not only was this an easy, (painless) and straightforward procedure it also allowed me to meet up with a good friend who works at the hospital. A great coffee (thanks Susie) and catch up plus a guide to take me to the Nuclear Medicine Centre – cheery!

So…I am trying to assimilate the need for rest, the need to review the activity demands and plan accordingly and the somewhat reduced sphere of physical activity I can consider myself capable of currently. Of these, the last one is perhaps one of the hardest things to get used to. Whilst I was in no way an “athlete” or competitive runner previously, I did get out on the local trails regularly and I do miss my “fix” of running in Falkland Estate and the Lomond Hills. In my head, I feel that I could probably go out for a short “jog/walk” type of exercise…that’s in my head at least. The reality of the “difficulties” climbing stairs two at a time, or the perceived steepness of the small hill I live on when returning from the shortest of walks brings thoughts of this down to Earth with a bump. However…

Earlier in the week, we bought me an electric mountain bike! This will enable me to get out on the trails “under my own steam” and give me back some aspect of my previous lifestyle. I am very, VERY keen to get out on it, but… I have recognised that my current planned activities for the tail end of this week mean that I am likely to overdo things by heading out on top of the other things already planned, so I am reluctantly standing by until I have suitable opportunity to do this sensibly. (Before anyone rashly thinks I have learned a degree of patience, I am also vey aware that I would be a prime candidate to crash on the first outing, if I am not fit and strong enough to control myself and the new toy).

Whoop, whoop – cannae wait!!!!

Monday afternoon, about 3 days since I completed my second chemo session, and time for a brief update.

Compared to the first cycle, this second one has definitely been rather easier on the mind and body so far. It’s not an entirely fair comparison as, prior to the first infusion, I did undergo additional transfusions and treatments that meant hours on drips and a couple of days/nights in hospital – probably not the best precursor to chemo. Add in the apprehension of the treatment itself and neither body nor mind were particularly relishing the prospect.

Positive notes from the recent treatment include little or no gastric upsets so far, I have been less “princess” on the drug taking front, my appetite remains good and my sleeping has been generally very good as well.

Tiredness is still probably the biggest impact still – I tend to have a rather too optimistic view of how much I can do compared to the amount of rest I take. Nicola is far more attuned to how I am affected by this and revises my expectations or plans to be more realistic.

With the treatment being on Friday, Saturday was pretty much left as a lazy day to aid recovery from “sitting doing nothing” the day before. I did rest, but didn’t sleep much during the day. No great efforts were involved, mainly reading the Saturday papers and working my way through some of the book piles I have amassed over the last year or so. We did watch the soccer on Saturday evening (I say “watched” – I actually spent most of 90 minutes struggling with various crossword puzzles from the papers, without too much success). A couple of episodes of the current favoured boxset and it was off to bed.

Sunday had a planned family visit – my niece Jenni and fiance Timi visited us for coffee and a chat in the morning. We haven’t see Jenni for a long time and it was our first time meeting Timi so it was a particularly enjoyable catch up. They are getting married in August so it was great to be able to wish them well in person. After this we had a light lunch and headed out to have a wander round the village. There was a fundraising event on where some people open their private gardens up for public viewing. It was just slightly unfortunate with the timing and weather. Ideally, I would have had a rest after lunch to be ready for the walk, especially as it was very warm (heading for muggy). Unfortunately, it looked like the rain was due to arrive later in the day, so I elected to head straight out. With the chemo, I am not supposed to expose skin to sunshine, so long sleeves were required – this made the walking hotter than was comfortable. There were a couple of gardens in particular that I had wanted to see, and we managed those, but I was flagging too much to make a full tour possible. This was, in fact, exactly what Nicola had anticipated based on the lack of rest so she had planned the route to give me a quick escape to home. Again, the good wishes passed on from friends and acquaintances in the village were abundant, and it was great to see so many friendly faces. Whilst out meandering through the village, I missed a visit from my sister Kay. It was a shame that we didn’t see her, however she did leave some home-made scones, jam and fudge on the doorstep – between these and cakes from my other sister Louise, my weight increase plans have lots of delicious options to work with…

Home, snooze, tea and I was ready to glide into the evening.

Sunday night’s sleep wasn’t the best, mainly due to the muggy temperature conditions and also due to poor fluid intake planning during the day (numerous nocturnal toilet trips as I drank too much water too late in the day…)

This led, naturally, to me having an easy day today – gentle start, no great exertion and lots of rest. Nicola did take me on a “surprise” shopping trip (it started as a fact-finding trip, but soon escalated to a purchase). More details on this tomorrow, but it may well be an inspired idea by Nicola to help me re-engage with some of the aspects of my “old” life that I am missing.

To be continued…

With essentially a repeat of yesterday’s morning activities, I arrived at the chemo ward at 08:30 to undergo my next infusion. As with previous visits, the hospital team sprung into action like an F1 pit crew and in no time at all I was cannulated, has my first tranche of pre-meds on board and was plumbed in to the first 2-hour drip bag. No fuss, no issues, just sitting comfortably with time on my hands. Today’s cannula position was at the base of my left thumb. This was painless and seemed a little less prone to kinks or flow restrictions when I moved my hand.

The seat I had benefitted from being in an area where I could get good dab radio reception. This gave me a double boost as it meant I had a raft of channels to pick from, and it also drowned out the abysmal (just out of tune) Radio Forth that was blasting out in the ward. Chuck a home made coffee (with some shortbread) into the mix, and it was a pretty good start to the day.

The pharmacist turned up early on and presented me with my drugs for the next 2 weeks. This brought me slightly down to Earth as it reminded me that the thrice daily drug issue and intake was back in play. On a positive note, I have one less tablet morning and evening, so that’s good.

All the time I was sitting being looked after in the hospital, Nicola was hard at work arranging the collection of the prescription and drugs that come under the umbrella of the GP’s control (painkillers and anti-haemorrhage treatment). With this done I now have the full set ready for 8pm tonight.

Back in the ward, between radio, regular BP and HR checks and the odd light snooze, the first drip was complete and the 30 minute pause before phase 2 was underway. This allowed me to start my (home made) lunch without the risk of upsetting the drip unit with the hand movements.

Another dose of pre-meds and drip 2 was underway. As I am essentially having two chemo sessions with every visit, there is a turnover of “single session” patients throughout the day. Various ages, sexes and treatments, but they all display composure and give friendly nods and “hellos”. A definite feeling of being united against a common foe. Their dignity in adversity is both humbling and inspiring. Over-arching the whole tableau is the care provided by all of the staff. Constantly providing care and constantly on hand to help and reassure.

By mid-afternoon I am beginning to feel tired. I have had the odd brief nap, but not as much as I would have had if I had been at home. It’s amazing just how tiring sitting on my arse doing nothing can be. Partly to relieve the slight compression pain on my (currently less-padded) butt, and mainly to eliminate the the somewhat greater pressure pain on my bladder, I decide to go to the toilet. This isn’t terribly complicated, but does require a little thought and co-ordination. I remove my headphones and put them out of harm’s way on a side table. I adjust my chair from slightly reclined to upright and retract the foot support (so that I don’t trip over the bloody thing). I can then give a scan of the ward to see if anyone else is preparing for the same trip, and if all is clear, I stand up. Lastly, I check the lines from the drip to my arm are not snagged, unplug the drip unit (or Dalek, as I call it – it’s about as good on stairs as I am…) from the wall socket and we trundle off to the toilet together. Actually, the toilet is quite a tight fit for me and the wheel carriage of the dalek, so there is a bit of manoeuvring required within the cubicle. Hands washed (keeping the lines unsnagged) and we waltz back to my chair and reverse the procedure. A bit of a faff, but a necessary one.

Once seated it is only a short wait for drip 2 to complete. This is followed by a flush through (to make sure I get the full volume) then I only have 2 x 15 minute bags to go (magnesium and calcium). It transpires that the 2-line cannula set up allows these to be fed in simultaneously, a saving of 20 minutes or so – result! Very soon I am disconnected, cannula removed and I head out to the main door where Nicola is waiting for me. Done for another day.

Back home, I’ve had a short sleep, a bit to eat and (having enjoyed Dan Evans being beaten at Wimbledon – don’t ask…) I am chilling. A little bit stiff and sore from sitting all day trying not to move my left arm, but feeling pretty good. The low-temperature induced pins and needles have returned to my fingers – the next couple of days will see what other side effects return to remind me of the treatment.

Slight shift of topic brought to you by my super alter-ego, Tangentman…

I am generally amazed by the data and information that one can extract from the Web. This was brought home to me again by a lovely letter of support that I have received from a true “blast from the past”. This came from someone I haven’t seen or spoken to since the late ’70s. I know we will have mutual acquaintances in common, but I cannot for the life of me work out how this person has managed to write to me at home. They didn’t include a return address, but if they wish to get back to me, I can be contacted at rentascruff@hotmail.com

I would have to advise them that I am in no condition to do either the “Tchaikovsky Hop” far less the “Trondheim Elimination Hammer Dance” but it would be good to catch up. (I suspect this will now generate FAR more questions than answers…) What makes this more remarkable (in my mind) is that I have tried to track this individual down via the internet myself a couple of times previously and, despite a relatively unusual surname, I have was unable to locate them.

Anyway, teatime and drug time approaches so I will sign off for the day. Thanks for taking the time to read this (whoever is out there reading it…)

VERY brief update…

Arrived at the ward for the chemo session today…all plumbed in and pre-meds administered, then my weight compared to last time was checked. Unfortunately, I have lost a bit of weight which means that the concentration of the treatment was too strong for the body weight. Bad news – session was cancelled; good news – now re-scheduled for 08:30 tomorrow (huzzah!)

I will now leave you on tenterhooks awaiting the next installment…

Wednesday 30th June, late afternoon.

A small pause to reflect over the last 3 weeks (of chemo cycle 1), and a look ahead to cycle 2, which starts with the chemo infusion around 10:00 tomorrow.

In the period after the first chemo session, there were a number of (relatively minor) side effects. My feet and legs were affected by swelling such that I couldn’t put on any of my normal shoes, couldn’t bend my legs enough to put socks on (without lying down on the bed) and struggled to be comfortable in anything other than jogging bottoms. I was tired out by simply walking up the stairs at home, required Nicola’s assistance to open the car door and was just a little bit short of needing help to get into or out of the car. Daily food intake wasn’t much more than a slice or two of toast and going to bed for a rest half a dozen times a day wasn’t unusual. Walks were generally flat, less than a mile and included a number of rests at benches along the way.

Here I am the evening before cycle 2. Legs and feet are pretty much back to normal, I am dressing myself (relatively) easily in “normal” clothes. Not only can I get into and out of the car unaided, I have also been able to drive myself on a couple of occasions. I am eating throughout the day – tea last night was steak and chips, which was eaten at a slower than previous pace, but with no “full” sensation. I’ve also managed a couple of 1.5 mile walks, albeit slow, but with no sitting. A huge leap forward from where I was 3 weeks ago.

So, what am I expecting tomorrow (and after)?

I am certainly expecting some form of “knock back” from how I am feeling today. Hopefully, this won’t be “back to square one” with the fatigue and swollen limbs as before, but more of a reduced energy level compared to my current status. I will be back on the chemo drugs again, so will have a fairly rigid schedule to adhere to – this has to be incorporated into the daily plans. Ideally, I will have enough confidence in how I am feeling by Monday or thereabouts that we can plan a couple of days away over the next couple of weeks. This would be be a positive step back towards normality. I would also like to be in a position to continue to have visitors, as I find this quite therapeutic too.

No results from Tuesday’s blood tests yet, but I am feeling fairly energised so can only assume that my haemoglobin level is still holding up.

With this reasonably positive mindset, I will go and pack my bag for tomorrow…tablet, iPod, radio, book and headphones. These “toys” will be supplemented by a flask of coffee and a packed lunch tomorrow, then I will set off for another 7 hours or so of exceptional treatment from the team at Queen Margaret Hospital.

I will provide an update with my condition after tomorrow’s treatment, probably sometime on Friday…

I have to be honest and admit that the blog has run into a totally unanticipated problem…

When it was initially conceived, it had a primary function to provide a background to my illness so that I could let people know what was happening, and that I didn’t need to keep repeating myself to a (surprising) number of interested people. This it seems to have achieved quite successfully, and that has been very positive for me, and hopefully for most of the readers.

As a secondary function, I had expected that it would also record and inform regarding my (hopefully VERY gradual) declining health and fitness, and give some “real time” insight into how I was coping mentally with this decline. As things stand at the moment, this element of the blog has hit the buffers. The reason for this has taken me by surprise – for the past few days, I have have been feeling an improvement in my general wellbeing, day by day. This is, of course, very much welcome, but it does rather muck up the “deep, black spiral of mental decline” element of the blog.

I am currently in my third week of the first cycle of chemo, so this current feeling of improvement could well be revised when I get my next chemo infusion on Thursday. Regardless, I will enjoy it while I can – “normal” service may well be resumed in a week or so…

Micro update notes – I am eating well (and not feeling the “full stomach” sensation nearly as much as before), sleeping well and napping like an expert. I am still tiring quickly and am personally shocked by the amount of muscle I have lost. Other than that, all is good.

If I assume that the “wellbeing” improvement is cyclical, following the chemo drug intake, it may be that some of the physical changes I have experienced will also be cyclical. Following the first chemo infusion my legs and feet underwent significant swelling such that I couldn’t put on my shoes and wore loose fitting t-shirts and jogging bottoms (none of my jeans would fasten around the waist comfortably). This last week I have been wearing my usual clothes…not remotely fashionable, but the lift it gave me to be back in jeans and normal shoes was remarkable. Next on my “normality” list is my hair. I had a haircut planned 4 weeks or so ago, but decided to postpone it for a couple of reasons. Firstly, it wasn’t quite at a length that was either particularly annoying or untidy. Secondly, I assumed it was all going to fall out with the chemo in any case, so could save a couple of quid by letting the treatment take effect. This first cycle of treatment has not had any impact on my hair yet, so I am in a quandary…do I wait to see if round 2 exfoliates me, or do I bite the bullet and get it cut? Decisions, decisions…

So, short-ish post as I don’t have very much to say. I have had some really enjoyable visits from family and friends, Nicola is still running around daft looking after me – I do aim to be low maintenance, but it is never at such a low level that she switches off. Focus now is on blood tests on Tuesday (hoping for another acceptable haemoglobin level = no transfusion) then the start of cycle 2 on Thursday.

Until the next musings, thanks for your continued interest – I hope the lack of any of my soccer insight in this post isn’t too distressing…

Thursday early evening and time for a wee addition to the blog

Blood test results from Tuesday were received yesterday – haemoglobin has risen again, so no requirement for a transfusion this week. This actually fits well with how I am feeling at the moment – the last 4 days have each given a sensation of incremental improvement, all of which has been very welcome.

Today’s little milestone saw me finish the two-week oral medicine element of the chemo cycle, meaning that I have a “week off” from some of the drugs (a reduction of 6 tablets, twice a day). This feels like a bit of a holiday regardless.

Today also involved an update discussion with the oncologist. He is quite happy with my progress to date and has booked my next chemo session (Thursday next week). No plans for a transfusion between now and then, but I will have bloods taken again on Tuesday to be sure. On top of this, I have been booked in for a heart scan (using a radioactive tracer!) in early July. This is a precaution due to a potential side-effect of the enhanced chemo version I am on. There is no indication that I have any problem and the oncologist thinks my prior fitness level should minimise any risk.

Final “official” business of the day was a call from Macmillan Nursing to set up my care plan. Their approach was sensitive, thorough and supportive, and well aligned with the rest of my care so far.

After the flurry of visitors early in the week, mid-week was quiet on this front. I did have a very enjoyable visit from a running friend, Susanne. Not only was it lovely to see her, she also brought doughnuts. The generosity of my friends never ceases to both amaze and humble in equal amounts.

Can’t let the update go by without a reference to the football…

I did watch the Scotland match and the highs (and lows) took me back to 1978…I might give it another go at some point, but alas, for me I suspect that it will always be “only a game”. This matters not one bit (and is certainly not a “loss” in my world), but as with other games, participation is understandable, spectating less so. Football will remain as it was for me, of little interest, mainly as a source of mild bewilderment at its’ effect on others. Right, I’m off to see if I still fit in my Klinsmann t-shirt from 1988…

So, Tuesday late afternoon and I felt that some form of update should be posted, if for no other reason than to show that I am still here…

The physical health and pill regime continues as before and, although boring, this seems to be suiting me well. Appetite and intake are both creeping up – I doubt if I will ever recover to the prodigious intake speed of my youth (by-product of being the youngest in a family of 4 kids – the survivalist drive to be first to get to the “seconds”. Actually, I think I have only felt threatened in this respect once…my niece Pam proved to also have a talent for rapid consumption, particularly if there were seconds of my Mum’s skirlie or roast potatoes with a roast chicken Sunday lunch. Pam, I can tell you now that I was so impressed with your ability that, if I was first to get a top up, I would always leave enough for the “young pretender” to share. It should also be stated that both Pam and I were slim, verging on skinny in those days…Pam remained like this whilst I went on to become a Zeppelin impersonator…) Anyway, I digress. I am eating well and feeling pretty good.

Mentally, I have had a couple of “dips” into tears and sadness at the (as yet vague and unspecified) “looming” end-point. I allow myself this, and don’t even consider it overly self-indulgent. I rather suspect these will expand and increase in frequency as time goes on, and I will continue to include them in the blog as they arise. Their brevity and fleeting nature at the moment make them (just) worthy of noting.

In general, the last couple of days have seen me feeling more energised from waking up in the morning (despite the 5 or so toilet trips overnight). I feel my colour is a bit better (I am still on added iron, so this isn’t a huge surprise) and I have been able to shower, dry my hair, dress, shave and get dressed without resorting to a wee lie-down between stages. Socks were the major culprit – with the lower limb swelling, I would have to lie down to be able to get my socks on without falling over. Generally, I would use this as an excuse for another snooze.

Actually, this perceived added energy simply converts to me feeling more awake during mid-morning coffee and not a desire to run up East Lomond, but I will take it as a positive regardless.

Blood test first thing this morning followed by a chat with a dietician. No results from the tests yet, but fingers crossed that it shows my haemoglobin level to be high enough to mean that I don’t need a blood transfusion this Thursday.

Dietary advice was pretty much totally aligned with my current eating activity. I say MY activity – it’s what Nicola arranges for me. It was good to have this confirmed, and there were a couple of interesting drink options which might help me with the daily grind of trying to keep my liquid intake up.

So there, that’s my health status with a minimum of diversion and excess wordage, apart from the youthful gluttony bit…

I continue to be blessed with lovely visitors (and Whatsappers, Messengers, Emailers and SMSers). I don’t tend to respond to comments on the blog (but do read them all) – mainly as it’s hard enough typing the Damn thing on my phone in the first place, and I don’t find it particularly intuitive (ie it doesn’t have subtitles for the hard of thinking) I thank everyone for their time and indulgence with me on this.

I had a visit from my Highland Spring boss and a technical colleague yesterday. Ian and Chris were in good form, and also not only brought me some bottled water (thank you 🙏) but also news on other friends and colleagues. It was a complete diversion from my normal day to return briefly to my “old” life, and it was great to catch up with them. We killed a pleasant couple of hours and it was a real tonic.

My brother-in-law Dave also popped in this afternoon briefly and it was great to see him and have a cuppa – your negative comments on the biscuit offering have been noted (not enough chocolate, apparently…)

We also had a quick coffee with friends (and ex-neighbours) on Sunday morning. During the chat we found out that they had a problem with their TV for the Scotland match tonight, so we insisted that they join us for that. I have been resting much of the day to prepare as best as possible for watching Association Football (I just hope that pesky offside malarkey doesn’t raise its’ head…)

With the football tonight I will have a quiet day tomorrow, with lots of rest.

As of just now (19:21), no results in from the blood test this morning. Thursday morning has an update telephone call with the oncologist but may also involve another blood transfusion. I am hopeful that my slightly more energetic feeling means that this won’t be required 🤞

Right…phone off, footie on!

OK, before I head off into the post I have “planned”, I thought I would give a bit of a first week of chemo summary…

The summary is very simple – apart from a couple of minor gastric “hiccups” (all pretty much resolved now, phew!) and the requirement to man up for the intake of a few wee pills, the days have all followed a similar pattern –

Get up and have breakfast in time for the 08:00 pill sesh; either rest or have a short walk; lunch in time for the 14:00 pill sesh; rest; evening meal in time for the 20:00 pill sesh; TV, bed and sleep (with a couple of bladder relief trips through the night).

This sounds (and probably is) boring, but since the discovery that I have cancer, boring is actually quite a relief.

I have had a number of visitors over the last week or so as well, and these have been universally welcome. Not only do they break into the “boring”, they also give me a window on the world outside my bubble. The range of visitors has been a mix of “old” friends, running chums, family and some of my friends from the village. Some have had personal experience of cancer and cancer treatment, either directly or in close personal terms. This doesn’t necessarily make their visits more “appropriate” or “therapeutic”, but it does generally allow a level of comfort from the start of the visit where those fortunate to have avoided cancer in their lives tend to have a couple of tense minutes being careful not to say the “wrong thing”. Given a few minutes, I like to think that (in my case currently) people should find that there are no “wrong things” to say. (Chances are, if there are any massively inappropriate or crass comments out there, either Laura or myself have already voiced them…)

So, a good first week, relatively balanced and with few issues, none of which required medical intervention. Early days, but I will bank these good times as a reminder of the start point. Apart from a blood test on Tuesday (hopefully, to confirm that my haemoglobin is still OK 🤞) I have either a call or an appointment with the oncologist on Thursday, at which point my last week of the 1st chemo cycle should start. This third week is the one with no pills at all (apart from the painkillers) – I am really looking forward to that part of the cycle. I am hoping that the review with the oncologist is a simple confirmation of the current status and that, by the time I sit down for the next chemo infusion, I will have a far better idea of what the process is like and might even be able to out and about a little bit more.

That covers the physical aspects of the first week so I will dip lightly into some of the mental aspects…

In terms of my “mental health” and “coping”, I believe all is good. Of course, I do have moments where, if left to its’ own devices, my brain would drag me down a dark spiral of self-pity and leave me in a deep, dark hole sobbing constantly. These moments tend to be brief and I can usually hold them in check using common sense. At the moment, there is unlikely to be any more information regarding the “terminal point” until the results of the first 9 weeks chemo have been reviewed. At this point, I am assuming that the time line will be adjusted (or not) depending on there being any measurable changes to the various tumours (or not). Until this happens, I am blissfully ignorant and so don’t allow the “what if…?” negative thoughts to get any grip.

My mental status was (jokingly, I think 🤔) brought into question by one of my old friends during a visit this week, when they cited my spectating at a cricket match as a sign of a massive psychological shift on my part. Thankfully, I think he believed me when I pointed out that it was an outdoor, seated venue, in the sun and that, along with the sugary pop was just what my body craved at the time. What further added to his concern was that I mentioned watching tennis from Queens and also that I had been watching some of the Euro 2021 football (both of which would have been utterly unthinkable during our Uni days).

Actually, the tennis is easy enough to explain…when I need a snooze, I put the tennis on quietly in the background, cover my eyes and am soon lulled to sleep by the dullness of the tennis (and generally low-key commentators and crowds – especially when the stands are half empty like at Queens).

The football is another matter altogether.

In terms of the the game itself, I have to very quickly state that I have practically zero interest in it, even at a national level. I would stress that this is utter indifference on my part, the game has done nothing to me in the past to cause my ambivalence, it just does nothing for me. I do like Guy Martin’s take on this –

“I have nothing against football. It just seems very wasteful losing 2 hours of my life to watch 22 millionaires on TV chasing a bag of wind in their underwear.”

However, the reason this came to mind was a call I received from a good friend with whom I used to work. Dave was (and probably still is) a big fan of the game. When he called enquiring after my health the conversation moved around to the imminent soccer competition. Years of working with him had taught me that, people who are football fans find casual indifference quite baffling, and ambivalence at international level to be completely incomprehensible. This has been the basis of many years of casual banter…so Mr McCord, the following is to remind you of the good old days…

Anyway, that’s my position…I neither understand nor care about the offside rule; I don’t understand how a team can lose its’ “shape” and any desire to follow the game at international level was badly dented in Germany in ’74, them crushed forever in Argentina’ 78. Since then, any observations I have about the game have simply increased the gulf.

So, whilst not interested in playing of the game, there are some aspects that I find almost fascinating about the business of football. Now I understand that I am very much in a minority, and I fully accept that I am truly ignorant of the game. If the hard-core footie fans can bear with me on this, and perhaps try see things from my perspective, you may be able to shed some light on some of the more mysterious dark secrets that are intangible to me…

BBC coverage, England v Croatia, half time review – airy studio, multi-regional/multi-national panel, good clear discussion (I understood most of it)

BBC coverage, Scotland v Czech Republic, half time review – dingy dark corner of the stand, sounded like the panel were all Glasgow based, between the diction and the stadium noise, couldn’t catch half of it. Why the change?

BBC coverage, Turkey v Wales half time review – airy studio, multi-regional/multi-national panel, good clear discussion (I understood most of it). Then the last part of the “review” was a look forward to the England v Scotland game – 2 days away! Bit disrespectful, surely?

As I have acknowledged, I am very much a minority, so I don’t expect the coverage to contain “subtitles for the hard of thinking”, just for the likes of me, but there are so many otherwise completely unexplained references throughout games, that I must admit, I get bored and my attention wanders. A case in point is the chosen bleach-blonde hairstyle of one of the England players. Not sure what his name is, but there were a couple of references to this being an “homage”. I can only assume that it is in honour of the gobby one in the Inbetweeners.

Perhaps the most bewildering aspect for the outsider looking in is the wonder that is Marketing.

Yes, I don’t “get” the “belonging to a tribe” thing and I don’t “get” the paying of money to watch others exercise, but ignoring that…if you are happy to pay to sit around for an hour and a half, enjoying good banter with like-minded mates, eating pies and drinking beer, I don’t find that unreasonable (if the pies are good…). The truly astounding bit is the football shirt/replica kit part.

Yes, if you’re 12 and want to show your team support by wearing a wee shirt with “Beckham” printed on the back, carry on kiddo, it’s just the next step up from your Buzz Lightyear pajamas.

Once adolescence has kicked in and you are ready to take on the real world, it’s time to put this with the rest of your toys…especially if the version you require now is in XXL

That’s it “rant” over – please remember that the football section above is aimed directly at a great friend, mainly to thank him for his kindness and support – it may seem childish and churlish, but I am sure that the target audience will be (slightly) appreciative. Cheers Lardy!

Warning – degree of “warts” involved in this bit…

Monday afternoon eased into the evening, and so far, the day had been much like any other. I was comfortable throughout the day day, if a little tired, but otherwise it was “just” another day. Things changed a little in the evening…

There are those among you who have lived, or are currently living with, direct experience of dealing with aspects of chemo, so I have no intention of diving into this in any detail. Suffice to say, following on from the intravenous drug infusion, there follows a period of oral drug taking to maintain the medication level. In my case, this involves taking around a dozen pills, twice a day. In terms of potential life extension, this is a very small inconvenience. Apart from travel sickness pills when I was very young (anyone remember “Sea Legs”? Utterly vile!), I usually don’t have any problems with taking tablets. A dozen requires a little mental preparation before I chuck them back, but given the context, not a big deal.

Until Monday evening.

For some reason, I took a complete mental “hissy fit” about the pills, eventually convincing myself that they would all stick in my throat and that I would be gagging and vomiting with the effort. Of course, if I did throw up, the whole exercise would have to be repeated… And so the spiral descended… Eventually, with a psychological cushion of eating a grape after each little intake, and with tears streaming (vomit anxiety?, embarrassment?, frustration?) I got them down, feeling very relieved.

Whatever fleeting sensation of “success” or “accomplishment” this may have allowed me was overtaken by another unexpected issue.

Trying not to be too graphic, the “signals” I detect from bladder and bowels tend to be be, at best, sudden, and at worst, almost non-existent. It would be true to say that trips to the toilet are generally triggered by a relatively standard “hmm, your bladder requires to be emptied” (usually expressed as “YOUR BLADDER REQUIRES TO BE EMPTIED THIS INSTANT!!!). There is very rarely an equivalent bowel signal – communications appear to be very scant in this area. However, the action of attending to the bladder condition normally allows the bowels to make use of the facilities at the same time.

On Monday evening, I experienced a couple of “near miss” issues with my bowels deciding to head for (usually explosive) evacuation, with practically no notice at all. Whilst disaster was averted on both occasions, this experience, along with the pill intake “wobble” left me more than a little apprehensive for the next few hours.

Thankfully, relatively normal service resumed and the degree of trepidation gradually diminished.

Tuesday morning saw me off to the GP for a blood test, to see if I was managing to maintain my haemoglobin level after last week’s transfusion. Back home and I laid down on my “day bed” to relax. After 3 hours deep relaxation – I woke up and (reluctantly) went to sit up in the living room (in case I “relaxed” again too much and couldn’t sleep at night…)

I was feeling better both physically and mentally and for lunch I managed a small bacon sandwich (- perhaps this was a subconscious reward for being a big boy and managing my pills in the morning). The explosive nature of my bowels has very much improved, leading me to believe that it may have been triggered by a reaction to something I’d eaten.

Early evening brought another bit of good news – the blood test had indicated that my haemoglobin level was still pretty good, so a further transfusion planned for Thursday could be cancelled.

Other highlights include a couple of really good nights of sleep, despite the day bed sleeps, and I managed a steak pie for tea, with no apparent side effects.

Small steps, but these help keep me on the sunnier side of the street.

Returning home from hospital is now becoming a bit of a routine. From the 100% focused care from a team of health care professionals, I am immediately cosseted into 100% focused care from my personal home care team – Nicola.

Whilst I had been relaxing at Queen Margaret Hospital, Nicola had been busy setting up a “day bed” in our back room, which overlooks our little back garden. Everything in place for me to sit or lie down with the garden, a view of Falkland Hill – and a TV. Add in books, magazines and comfy cushions and I suspect I will be spending some time in here.

Having received 3 units of blood on Friday, I felt reasonably good making my way from the ward to the car park, and was soon back home. Eating tends to be more like light grazing throughout the day, with trials to see what can be easily taken in without prompting the “full” sensation that tends to blight most eating plans. A light evening of TV then an early night saw Friday over.

Saturday, and much excitement! The lovely people at Maggie’s Centre had arranged for me to get a “blue badge” allowing me to use the disabled car parking spaces. This arrived so we decided to give it a test by heading to Glenrothes for a coffee. This in itself doesn’t sound like much, but given the degree of fatigue I can feel from the most trivial of tasks, the idea of taking a few yards distance (and in some cases, elevation) off a walk can make a difference. As I am currently, the effort it takes to shower and wash my hair generally means that I need to sit (or lie!) down by the time I get upstairs to the bedroom to get dressed. Add in the manipulation of my electric razor and “getting ready” to face the day can be a snooze-inducing event. The thought of a walk thereafter on going “out” can tip my mindset into “too tired” mode, scuppering the initial happiness felt at the thought of doing something normal. A short drive from home and we were parked in Glenrothes. There was then a short(er) flat walk to the cafe. Nice coffee (and I even manned-up slightly and had an Empire biscuit too), easy stroll back to the car and it felt like I had actually accomplished something approaching a normal morning. It doesn’t take much…

With visitors planned for Sunday morning, Saturday afternoon and evening were used to relax and re-charge. As a personal measure of my mental recovery, I compare my enthusiasm for the crosswords in the weekend papers. Saturday saw me half-heartedly have a go. This was an improvement over the previous week where I couldn’t be bothered even looking at them.

For Sunday morning, the plan was for my sister to bring my Dad through from Dundee for a visit. I am not quite up to driving through to visit him by myself, but hopefully that will change.

Dad arrived around 11:30, and we settled in for a coffee and a chat. My illness has obviously been an upsetting issue for us both, but I think he was reasonably pleased with how well I’m looking (under the circumstances – obviously I have looked better…) and it was great to see him also looking well. Coffees and chats completed, we waved them off – and I immediately went for a rest. The weather was pleasant when I felt more awake, so we went back to the local loch and had another stroll around. Sunday was proving to be a difficult day in terms of liquid intake and the spectre of the problems I’d been having trying to swallow the required pills was also filling my head. I found these negative thoughts hard to shift and the “cloud” sat over me until I actually completed the intake. Nicola patiently put up with my nonsense and once I had managed the drugs and regained some (much needed) perspective, the remainder of the evening had me engrossed in a box set on the telly. May not seem like much, but the diversion cleared up my mood and set me up for a good sleep.

Monday morning and afternoon has seen much of the same pattern, with me making good use of my day bed. The time spent relaxing here has had a couple bizarre “day dream” spin-offs… Firstly, I have taken a notion for a cup of tea and a bacon roll on one of our mornings out. The second image came to me as I drifted in and out of sleep (or recovery snooze…) – it involves taking a motorbike up over the Bealach na Ba’a road to the Applecross Inn, parking by the beer garden, getting the crash helmet and jacket off then tucking into some of the Inn’s grilled, buttery prawns with a cold beer (or two). Sheer Heaven!

As things stand, I am not convinced that I would be able to manage a full bacon roll, nor do I think that I’d have the stamina to ride a motorbike round the village here and be able to get off it unaided, but it was still a mighty appealing thought…

Following the chemo and slightly unsteady on my feet (probably because I had spent all day sitting on my arse…) Nicola whisked me home (where I spent more time on my arse – I am getting good at it…😂)

As I have previously self-selected morning/evening drug intake times of 08:00 or 20:00, not long after I got home it was time to sort out the slightly daunting drug combinations n required. Thank goodness Nicola was on hand to work through the various quantities and timings – I was struggling. Drug intake complete, I was tired, so headed off to bed.

Yet another great night’s sleep followed and I woke feeling very refreshed. The only symptom from the previous day’s treatment was a “pins and needles” feeling on hand/wrist/forearm that had been attached to the drip. Greatly relieved that this was the worst side effect so far (🤞), it was breakfast, shower, shave and pack for today’s blood transfusions. Breakfast drugs sorted and taken, lunch drugs selected and packed (along with the a picnic prepared by my far superior other half) and it was in the car and off to Dunfermline. Or it would have been, except Nicola went through my breakfast drug list and, of course, I had forgotten some…doh! Quick reverse up the road and this was remedied.

In the hands of the team at the hospital, I have been sitting (again) and have been well cared for. Third unit of blood has almost been completed, Nicola is waiting outside for me and (apart from the drug sorting 😬), all is set for a relaxed evening recovery at home.

Saturday is planned as a rest day, as is much of Sunday, so I am not planning on boring you with any further blogging until sometime next week…

Thanks for the interest shown to date, and the lovely comments. All are appreciated.

Due to circumstances changing during the day on Tuesday, I reckon I over-did things a bit…

I had 3 “visitor sessions” in the calendar (yes, I actually need to schedule visits!), one mid morning and two late afternoon/early evening. However, just as I was settling in to bed at lunch time to re-charge and be (relatively) good company for the afternoon visits, my GP called to say he was available for a visit in the next 15 minutes. Dr Collinson is a family friend, and a great “old fashioned” GP. I have always trusted him and it was really good to see him and get his insight into my condition. It did, however, have me awake for longer than I had intended, so I certainly wasn’t “sparkling” company for my other visitors. I enjoyed the visits immensely, but was tired for the rest of the evening. This being Wednesday, my mind was already beginning to go through scenarios about the consultant meeting on Thursday morning.

The primary concern was whether or not the additional calcium treatment and fluid intake had put my blood in a position where treatment could go ahead. Second to this was the worry that my fatigue put me in a position where my body couldn’t cope with the chemo through weakness. Thirdly, IF chemo went ahead, would it be the standard version, or would the main tumor be appropriate for the enhanced version.

Another good night’s sleep, and it was time to go to the appointment…

Thursday morning, apprehensive (= scared, nervous wreck), Nicola drove me to the appointment, and thankfully, came in with me.

Physical summary – blood haemoglobin is still piss-poor; calcium level is high, but (just) acceptable); weight is up slightly (but this may be due to the retained fluid in my elaphantine legs). AND, I am a candidate for the enhanced treatment type as well – if Carlsberg did appointments…

Another review of the pros and cons, and I decided to sign up for the chemo…

In a flash it was “goodbye Nicola” and I was whisked away to a reclining seat in the chemo unit.

If I’m honest, the bulk of the day has been a blur of healthcare professionals looking after me – as with all my contacts with the NHS, the support, patience and care from everyone has been humbling. At all points the process was explained, applied and concluded in something similar to a Ferrari pit stop. Even when I exhibited a mild reaction to the “super drug”, skilled hands were there to assess, revise and re-start the process with no fuss. The reaction required a couple of additional steps to the process, which added time. As I am typing this, it is 17:50 and I have around an hour to go.

The pharmacist has given me a a small mountain of pills and a strict timetable for taking them. All I need now (well, in 45 minutes) is to be disconnected and sent home.

I would love to say that this will be my attendance complete until 3 week’s time, however… Due to the poor state of my haemoglobin, I have to come back to Queen Margaret hospital tomorrow at 09:00 for a blood transfusion (3 units) – another 6+ hours in a reclining chair being pampered…how hard can it be…?

Having enjoyed the “up” with Sunday’s good things it was only a matter of time before I hit a sub-optimal phase…

After a disturbed night with a lot of back pain, the gradual grind into Monday was really just a load of tiredness and snoozing. The day was due to start with a blood test (always a fun event…) but the venue for this hadn’t been confirmed. A quick call to the oncology team and they were able to get this arranged to take place at the local Health Centre – result! More importantly, I was able to discuss the medication I’m on. Without going into lots of detail, the predominant feature of my current condition is back pain. This has been treated with paracetamol and ibuprofen, and latterly I have had a strong liquid painkiller which I took to help me sleep. The new liquid works quickly, but also doesn’t last as long as the previous tablets. Over the phone we were able to organise a stronger, slow-release tablet for me to try as an alternative. Giving blood samples is becoming a tad more difficult due to a combination of my dainty veins and arteries and the numerous punctures they have enjoyed over the last few weeks. However, this was no obstacle to the nurse at the practice, and, as ever, I barely felt it. Just to conclude the “warty-bits” update, I am becoming aware of a degree of change to my physique… Most of you will be aware that I have never been likened to a bronzed Adonis – partly due to my translucent white complexion, and partly due to my general lack of muscles. Suffice to say, I could currently be an extra from The Bridge on the River Kwai (if you added several layers of spray tan – not a pretty sight. It’s no exaggeration to say that I get tired climbing up the stairs at times, and often pause to catch my breath at the top. However, it isn’t all warts…

In between (frequent) snoozes, Nicola and I went for a stroll around a small local lochan, Birnie Loch. With the warm sun and the picturesque setting, it was a great boost to be there – it also has seats dotted around which was also a benefit.

Naturally, the walk generated the need for another almighty snooze…

Other notable “good bits”. Yesterday I managed a bowl of porridge for breakfast, a roll at lunch time and (as Nicola had freshly roasted it) chicken and chips for tea. Probably the most I’ve eaten in a day for a couple of weeks. My weight has increased by 6 lbs over where it was last week. Still early to be sure, but the new drug regime gave me a good night’s sleep last night.

Right, must pop off for a snooze to save some energy for a late lunch and a visitor or two…

It’s around 1pm on Sunday 6th, and the recovery (from hospital) continues.

Apart from taking painkillers to ease my back pain, the only other medical instruction I am under is to drink 3 litres of fluid every day.

3 litres.

It doesn’t sound much, but when it becomes an instruction, it is suddenly a huge obstacle to overcome. One of the primary issues is that I am not a fan of plain water (although our tap water quality is very good) – I just don’t enjoy drinking the damn stuff. I am trying various types of diluting additions, I have also upped the tea and coffee intake, but 3 litres is a hefty target. I am currently sipping a glass of Sprite and yesterday I even managed a couple of cans of coke (more on that later…) Those who know me well will be well aware that my dislike of water and fizzy “pop” are not a recent characteristic, but they do constitute an irritation in the 3 litre plan.

However, the last post (ooh, that sounds ominous) ended with me enjoying the first morning at home after my brief stay in hospital, so I thought I would give an insight into the rest of the day…

We were lucky to have family visiting Falkland this weekend, so we were able to catch up with my sister-in-law, her husband, three nieces and two partners. Meeting outdoors was the preferred option, and the weather here was sunny and warm. We decided to head down to Scroggie Park where Falkland cricket club were playing. I have lived here for over 20 years, but have never before sat and watched the cricket, so this was a new experience. It was idyllic. Warm sun, Falkland dominating and sitting at the clubhouse, sipping a cold coke. The sun warmed me nicely, the chat was pleasant and two hours of relaxation was a fantastic plus.

Once the teams changed (at 50 overs, apparently) Nicola and I decided to head home – I knew fatigue was gradually overtaking me. The stroll to the car through the sunshine, listening to the birds and the gurgling of the Maspie Burn was a perfect end to the afternoon.

A quiet evening with mindless telly (and occasional snoozing) led me into joy of sleeping in my own bed again.

Wart alert! 3 litres of fluid intake has its’ other downsides, so the night’s slumber was interrupted by numerous trips to the toilet. This meant that this morning I awoke tired (again).

Managed a full bowl of porridge this morning then spent some time sunning myself in the back garden. Extended family popped round to say goodbye before heading back home to the “deep South” (Essex and London). This was followed (after ANOTHER snooze) by a visit from a local friend, currently living under the cloud of cancer, Bob Stewart.

Bob was the joiner who renovated our cottage a few years ago and (in my opinion) was a genuine craftsman. Sadly he was struck by a cancer and has been through several serious bouts of chemo and stem cell treatment. Despite living with this, he took time to come and see me and have a chat. It was refreshing to speak to someone who has experienced something similar to what I am facing and who understands the degree of waiting and hanging around between the various decision/information points. It was also good to be able to discuss some of the issues frankly and with no false hope or straws to clutch at. That’s not to say that it was a grim, depressing discussion – far from it. It was easy, enjoyable conversation with someone who used to be very active and is now unable to live as he used to. His grace in accepting this new status and the utter lack of bitterness in his demeanour is a great example for me to keep in mind. Regardless of the outcome for me, life does not stop with bad news, it stops with giving in to the bad news and forgetting all the good that is still around. With my immediate and extended family and all the friends that are behind me, I will have plenty of motivation to carry on as far as is possible.

But apologies for this self-centred navel gazing, let me get to the answer to the question you are all asking…

Falkland won the cricket by 121 runs (I believe the opposition were Forfarshire)

That’s it for today…time for a snooze, mindless telly…and another 2.5 litres of fluid.

Micro update…

After literally hours on a fluid drip and a couple of units of blood in hospital over the last couple of days, my blood wasn’t quite good enough to get to the required level for chemo next week. The oncology team got involved and the upshot was that I had a final drip (of a drug used to treat osteoporosis – I think it reverses the loss of calcium from the bones). After this I was able to call Nicola and get a lift home – hurrah!

Home at around 7pm, bed at 8pm and the best sleep I’ve had for a couple of days.

Roll on 12 hours and I am out of bed, enjoying a cup of tea and getting ready to shower without a drip stand attached – luxury! To get home faster, I chose to collect the more powerful painkillers sometime today (the alternative was another night in hospital and wait for the pharmacy making up my prescription (along with hundreds of others). Having seen a couple of other patients being told “we’ve asked for your discharge drugs” and watched them waiting for a number of hours to get them, I thought I’d be better waiting at home and using some of the narcotic arsenal I have here in the meantime.

Started with paracetamol and still feel like I have been run over by a truck, so escalation with ibuprofen will follow.

Thanks for the all the goodwill messages, they are all really appreciated.

Since getting hooked up to the drip at 03:30 yesterday morning I have gone through a bag of saline every 4 hours or so. The purpose of this is to help flush out the excess calcium in my blood ready for the start of chemo next week 🤞

Unfortunately, my hope of getting home this morning were quickly dashed as the doctor felt I hadn’t improved enough to progress to chemo. So…another day, another bag of saline connected.

The drip is not a painful process, but it is very uncomfortable trying to get to the toilet quickly when you need to unplug it from the wall and push it over to the toilet. Once it loses power, it switches to battery and beeps constantly – waking up the other patients in the ward.

On the plus side, Nicola has been able to visit me (yesterday evening) and is due in shortly 😊

The oncology team are due in to review my test results, so I may know more later…

Rough timetable of events last night…

17:45, arrive at the Vic and have to leave Nicola at the front door as I am headed for the Red Zone. (I think this is a reference to the PPE requirements in wards and waiting areas)

Throughout the evening, I have a barrage of tests blood samples – even an x-ray!

Doctor is held up but after a bit of sitting about, I am taken to my bed (corner bed in a 4-bed room, two other beds are occupied) – it’s 01:30…lights left on until after the doctor has visited.

03:30, after a chat with the doctor, I have been put on a drip, lights go out and, as my head hits the pillow, so do I.

04:00, woken up for drip bag change.

05:30, blood pressure, temp and HR check, drip bag changed

07:00, as per 05:30, but lights are put on and I am encouraged to have a shower

08:00, meds and breakfast. Sitting in “my” chair (no visitors allowed 😔). Nice breakfast (porridge, orange juice and tea) – I am guessing slightly regarding the oj and tea…that’s what I asked for and they were both liquids in different types of containers, but to distinguish them by either serving temperature or taste was tricky…

Big excitement for this morning – I am going to have a blood transfusion to speed up the process of returning my blood to a more normal condition. Never had one before so have no idea what is involved…

More to follow…

Reading back, I think I have mentioned that I have been getting tired more frequently than usual and have actually been taking the odd nap during the afternoons. I mentioned this to the Nurse who is the key member of the team looking after me through the treatment. Whilst a degree of fatigue is to be expected when my treatment starts, Kerys wasn’t happy that it was happening at the moment. Less than an hour later and I was giving blood samples at my local GP, with a meeting to discuss the results arranged for tomorrow morning.

5pm I get a call back from Kerys – they have organised an overnight stay at the hospital in Kirkcaldy to be hooked up to a drip. This has been thrown into the mix due to a high calcium level in my blood. The instruction was “eat your tea then pop along to the Vic when you’re ready. There may be a wait for a bed…”

Steak pie for tea, throw together an overnight bag and off we pop. Arrive at the hospital at around 6:45pm, half an hour waiting by the door then the nurse and I head to the waiting room for the ward (AU1, I think). As this is in the “Red” zone, Nicola isn’t allowed to come and wait with me.

In the chat on the way to the waiting area I am advised that there will be an assessment of my condition at the waiting area, then around 6 hours to wait while the bed is sorted and the doctor’s planned treatment is checked and arranged.

I may be able to provide an update once I am settled.

Could be in for a long evening…mentally, the peak excitement for today was accepting that this would be my last day at work for some time, but that will be part of the assessment post-chemo.

Tonight was to be another evening with my feet up, watching the TV…you just never know what plans Fate has to upset your own…

Having received an invitation for a video call with the oncologist to take place on the 24th of June, I was mentally prepared for the first chemo session to take place after that. I was a little bit disappointed that it further in the future than I’d hoped, but it did give me a couple of weeks to get prepared and ready for the aftermath at home…however…

Phone call today advising me that I have a blood test on Monday 7th, and if that has the required results, my chemo commences on the 10th.

Mixed feelings at this point – very happy that it’s sooner rather than later but a bit stunned that my preparation time is shorter than expected. I say “preparation” – in fact I have little that I have to prepare. I want to have a decent handover at work (I was planning on finishing this week anyway as my concentration and alertness are both deteriorating) and I need to sort out some stuff in readiness for the potential side effects of the treatment. Other than that, lots of rest was the only goal I had in mind.

So, on the plus side, treatment starts sooner than expected (which means that the review and forward plan will be known sooner 😊)

On the downside, I have less time to catch up with some of my friends before treatment starts, so some of you may be confronted by “post-chemo” Sandy – I have no idea what that will be like…

Just to follow up on the rest of the day in Taynuilt…

A fine breakfast was followed by a walk round a local lochan, a wee rest then lunch. Meds today have been restricted to a couple of ibuprofen and my back has been fine all day. 😊

The meds definitely make a difference but I am sure that the effects of being relaxed in the company of good friends are also very significant.

After yesterday morning’s dip it was a relief for things to turn around so much…onwards and upwards…

It’s 07:15 on Sunday morning. I have had a good night’s sleep (just a couple of interruptions with cramp), back pain is minimal. The sun is streaming in through the bedroom window and the view over Loch Etive is stunning!

Wind the clock back 24 hours and it was a very, very different morning…

Friday night’s “sleep” (at home) was uncomfortable, punctuated with 10+ bouts of cramp and an increasingly painful back. Having no plans for the morning other than an easy morning before heading over to Taynuilt for a stay with friends, I opted to doze for an extra couple of hours beyond my usual rising time. This was partly to “save” some energy in the hope that I could stay awake during the evening instead of becoming a zombie by 10pm, but mainly because the pain in my back was way higher than usual. I acknowledge the fact that I normally get out of bed like a shambling old man (no idea why… 🤔) but yesterday’s effort was accompanied by gritted teeth, sharp intakes of breath and eye-watering close to actual tears. This was due to the level of the back pain which was way higher than I have experienced before. Normally, the twinges in my back ease off when I move around – yesterday it jarred with every step. Even after a couple of painkillers with breakfast it wasn’t shifting.

In what felt like a defeat in the first skirmish of the campaign, (and after a strong “suggestion” from Nicola) I called NHS 24 to see if they could provide something a little stronger than the over-the-counter painkillers that I had been using. They obliged, and Nicola headed to St Andrews to collect the prescription and pick up the “gear”.

As the pain was making me grumpy and miserable (I know, very hard to imagine…) I had thoughts of cancelling our night away with friends and retreating to bed. While Nicola was away I did a couple of (very) light chores. Bringing some washing in from the line was a pantomime of restricted arm movement, wincing with the effort of removing clothes pegs and struggling with the weight of a duvet cover. Once inside, I couldn’t even be bothered carrying it upstairs to put away. (Just in case I am getting sniggering from the cheap seats – none of this was because I have never encountered laundry previously and I do know where the clean bedclothes are kept…)

I finished packing my bag (at a glacial speed) and sat down (yet again – I don’t think I have had a Saturday morning as sedentary as this one ever.) Nicola returned, I tried one of the new painkillers and we set off a couple of hours later than planned. I couldn’t drive – the drug information said not to and it was hard enough getting into the car anyway. Those who know me will be aware that I am a lousy passenger, however the combination of Nicola’s smooth driving and the start of the pain relief meant that I actually relaxed and enjoyed the journey. The scenery didn’t disappoint, the sun came out (literally and metaphorically) and we arrived at our friend’s fabulous “croft” in Taynuilt.

I met John at university so we have known each other for a few years (40+). Whilst we don’t meet John and Undine very often, when we do, it is like we are picking up from a conversation from a day or two ago. Seamless, easy and utterly relaxing. Getting out of the car was still a bit “nippy” but once the chat was flowing (accompanied by wine) I noticed the pain less and less. A wee walk around the area above Taynuilt where their house is situated, a fine meal and great catch up chat made for wonderfully relaxed night.

The views from the croft are stunning in all directions – the photo doesn’t do justice at all.

So, from a morning where the first “blip” in my symptoms gave me nightmare visions of the burden I am likely to become for my loved ones, and the deep downward spiral this induced, the day (and my mood) turned around 360° and became a fantastic evening/night.

You may want to know what this miracle drug is…

I honestly believe that the painkiller was just that – a strong suppressant of nerve signals that allowed me to make a journey to visit good friends. The real miracle “drug” was the joy of being with friends and the care-free atmosphere that this brings. Having warned my hosts (based on yesterday’s morning) that I may lie in bed for a while in the morning, I am actually getting ready for breakfast and a good day to follow.

Hi all. From the very start of the blog the sole intention was to inform any interested parties of the progress of my health situation. I was also using it as a form of therapy that allowed me to to “take stock” from time to time and to remind me that there is far more to me than an illness.

The platform I am using is free, and as the administrator, I am bombarded with “helpful” suggestions regarding making a profit from the blog. These have been studiously avoided (and I even considered paying for the platform to eliminate the unavoidable adverts that come with free software.

This morning whilst I was browsing Facebook, I saw a post by a friend, Scott Robb, who is about to undertake a very challenging run which will take in a climb of Ben Nevis followed by a run down the West Highland Way – an incredible 106 miles or so. People’s running posts and photos are a difficult read for me at times, as I am unable to even jog a short distance, but I use them to access the sport I enjoyed vicariously.

While scrolling down Scott’s post, I was gobsmacked to see that he is using the run as a fundraising opportunity, citing me as a prompt for this fundraising. This was a complete surprise – Scott has messaged me from time to time, but never mentioned this.

Once I regained some composure (c’mon, I am a very sensitive little flower, it doesn’t take much to set me off…) I elected to place a link to Scott’s Facebook post to hopefully increase the views and support for both the incredible undertaking and the added fundraising element.

I have no intention of filling this blog with my selection of adverts on top of any others it may contain, but am so deeply touched by the fact that, at a time of significant training and preparation, Scott has taken the time and effort to help others with his generous act.

Composure is slipping again so I will stop here, but will let you know how Scott gets on – no pressure mate!

With the promise a couple of posts ago to introduce some of the “warts” I thought I’d bring you up to date with some of the less-fun trends in my day to day life.

I (think) the back pains are increasing slightly. I have a degree of doubt about this as I had my second Covid jag a couple of days ago, so that might also be a factor. I am still well within standard paracetamol limits so am not expecting morphine any time soon (although if any of my medical or veterinary pals out there have any suggestions/offerings, I might be interested… 😉). I rather suspect that the next escalation on the narcotic front may be the occasional ibuprofen, to see if that makes a difference – not exactly Breaking Bad territory.

Gurgling stomach – having operated in the background for 60+ years, my stomach is now demanding a centre-stage role producing a cacophony of rumbles and gurgles. These then migrate to become a series of burps (so it could be worse…)

Tiredness – there’s no escaping from it, I am tiring as the working day passes, and now generally feel knackered by 3 or 4 in the afternoon. This can be reversed by a long sit with my feet up but I suspect the afternoon nap may become an established part of my day. As I still tend to feel pretty good most of the time, this fatigue had me a little puzzled. As I am no longer running, my level of exercise has vastly reduced. A moment or two of consideration gave me a couple of potential answers to the conundrum… Firstly, my body is trying to “fight” an alien interloper (sounds like John Hurt in the first Alien film – not my role-model going forward…😳). Secondly, possibly related to the first thought, my current resting heartrate is around 65 bpm…a few weeks ago it was 49 bpm. I am practically exercising as I sit and do nothing. Also, as I feel fairly full after a relatively small intake of food, I am not eating as much as I used to.

Not a weight loss strategy I would recommend…

Overall, in view of the bigger picture, I am still in no position to complain (yet).

In “non-wart” updates, after the heady excitement of my proposed jeans purchase decision yesterday, I haven’t quite got round to doing anything about it. This is partly because I find clothes shopping a terrible chore and partly because my main “style” critic is abroad. I did get Laura’s input earlier today to help focus my thoughts, so might actually get my butt in gear and do something about it. Soon.

In other style news, I cancelled an imminent haircut (I book one around 6/8 weeks ahead from the previous appointment). There were two reasons for this – 1) I don’t think it is looking too bad at the moment… 2) it may well all depart in the coming weeks anyway.

Incidentally, Laura advised that chemo can affect the small hairs in the nostrils, making one more vulnerable to hay-fever. I’ve never been too badly affected by hay-fever, but it did make me wonder if it would eradicate the hair growth in my ears as well? Maybe I should keep a list of these silver linings as they crop up…

I decided to take a couple of days break from the blog – no great reasons why – I don’t want it to get too boring (oh…too late for that…) and I am also beginning to get tired more quickly.

On the physical health front, I still feel pretty good, so no complaints there. I had my second Covid jag yesterday and think that has also added to my general fatigue. I am getting better at the food intake process (actually, Nicola is keeping me right on that, I am guided on what works best for me). I am even drinking more water (and slightly less wine). I am sleeping quite well, so all in all, doing fine. Paracetamol intake has gone up slightly (well within allowed limits), but I think that’s to be expected.

On the mental health front, the last couple of days have thrown in the odd “down” period, but recovery from these tends to be rapid and I see them as part of the “rich tapestry” that a situation like this inevitably presents. Thankfully I have my family to help me through the darker times and this is definitely a team effort. One of the thoughts behind this blog was the (immensely selfish) notion that, if I put the current status out in the ether, I am less likely to be “caught out” with someone unaware of my health asking me a cheery “how are you doing?”, and being “forced” to give some form of synopsis without a quivering lip. (In reality, I would probably lie and say “fine” followed by a swift subject change.) In this regard, it has all worked well so far.

Whilst I had mentally braced myself for encounters both with people who know and people who don’t, I have been completely caught out by the astonishing tsunami of goodwill wishes and offers of help that have been pouring in. These have been incredibly kind and so far-ranging that I have been genuinely astounded. Thank you to everyone, I am (almost) speechless. What has been particularly moving is that these usually offer assistance or benefits to Nicola as well, not just to me. The recognition that this isn’t a solo challenge means such a lot to me. I cannot imagine what it must be like for someone with no family or friends to go through a situation like this and I am very grateful to everyone for their love and support. It does make me feel guilty for dragging you all through this sh*t-storm with me (but I will get over that…)

It can be risky to be overly optimistic I think. I am generally a fairly optimistic person (no, honestly!) but with so many unknowns in front of me, it has occasionally been difficult to walk the tightrope without leaning towards the more gloomy, pessimistic side. However, in a momentous fit of positivity today, I have taken two decisions that could possibly be better left until the chemo results come in… Firstly, I will buy new pair of tyres for my car and secondly, I will buy a new pair of jeans. Probably doesn’t sound like much, but given the circumstances, I did mull these decisions over for a while. OK, the car will need new tyres if I have to sell it in any case, but I will go the extra length and get good ones. Feels forward-thinking to me – like a little victory for “positive” me. Might even wash the car at some point…now that is a big decision…need to take my time over that one…

I am a little conscious that, for a “warts and all” blog, there have been very few “warts”. This is due to the relative lack of negatives (if you exclude the obvious massive one…) and the abundance of positive things that have been happening.

That doesn’t mean that it is all sweetness and light – far from it. I certainly have had ups and downs, and I suspect both my wonderful wife Nicola and my incredible daughter Laura have experienced these too. Modern technology allows us to video-call and from the outset Nicola and I decided to keep Laura fully informed of the situation. She is currently working in Catalonia (Catalunya?) so is physically remote from us. Obviously, some calls have been harder to make than others, but the openness has been a huge assistance to me. Whilst I can have an occasional meltdown here with the support of Nicola by my side and it is very comforting to know that Laura is among friends and loved ones in Spain.

I imagine we all approach these challenges in different ways and I would be very sad to think that it was an all-consuming cloud of doom suffocating my loved ones.

I don’t believe this is the case though… On a family WhatsApp group this morning, my niece Caitlin commented (rather kindly) that she had read my blog and thought my quality of writing was such that I should “write a book”. The lightning-fast response came back from Laura – “or a short story”. It made me laugh out loud (I am smiling just writing this) – that’s my girl!

So a cheery start to the day gave a good foundation for a walk in the local estate. Warm sunshine and fresh air put a spring in my step and it was probably the longest and least painful walk I’ve had recently. I don’t know how to add photos to this blog, but Falkland Hill looked lovely in the sun and it was nice to pause at the cricket club to enjoy the views and warmth. Nicola’s sister has been visiting Falkland this weekend so her company added to the enjoyment of morning.

Scroll on into the afternoon and a meander through the village resulted in a hot chocolate at the Fayre Earth shop. Sitting at the window, watching the world go by while chatting to Elizabeth just added another layer of normality into this bizarre situation I find myself in.

I wouldn’t (currently) describe my days as seas of despondency with the occasional island of relief…quite the reverse, actually. No doubt, over time, the balance of these moments will change and pockets of relief will become less abundant. In the meantime however, I will enjoy the elements I can, while I can, keeping the “warts” at bay for as long as possible.

Rather than stare into an abyss of uncertainty for the next 2/3 weeks, watching the second hand of the clock ticking off time until the next injection of facts into this process, we (my wonderful wife and I) are to commence planning some things to look forward to. These will include catching up with friends that we haven’t see for many months/years, going places that we’d planned to go, but were blocked by the pandemic restrictions and generally escaping from the aforementioned abyss-staring. It won’t be possible to catch up with everybody I’d like to (c’mon, I’m still working, as is Nicola) and unfortunately flights are not recommended by the consultant, so trips abroad aren’t on the radar.

If I continue to feel as (ironically) healthy as I do at the moment, we should get some decent road trips underway. I’ve never really had much desire to travel far abroad. I have always loved Paris (although the weather has been shocking the last couple of times I’ve been there) and Seville was fantastic for a long weekend so the opportunity to re-visit them being denied (at least in the short term) means that we’ll be more Scotland focussed. We’ve always enjoyed the West coast so I’ll maybe be able to sneak another trip to Applecross via the Bealach Na Ba or up to Gairloch. I also have a sentimental attachment to Ballater and the surrounding area, so that may also feature. Wherever we end up, it will be a welcome distraction from the real world.

One of the major issues with writing a blog like this is the requirement for some degree of structure and thought. Those who know me well will recognise my superhero persona of Tangentman – whatever I am doing I am assailed by utterly random thoughts and distractions, and my mind flits from topic to topic at a moment’s notice. Some topics may be linked to an extent – (Applecross // road trip // check tyre pressures). Others can be harder to follow – (Applecross // first drive over it // Saab 96 // why did Saab pick the Ford Taunus V4 engine?). Still makes some sense in my head, but from the mention of “Applecross” to me saying “I wonder why Saab…” can lead some folk to wonder just what is going on in my head. It’s not particularly under my control, but it can make conversing with me “interesting”… Anyway, I am looking forward to making plans and am relishing the chance to visit some friends.

Closer to home, I have a very extensive list of if offers to meet for a chat. I can assure everyone that has been kind enough to propose a rendezvous that I will be delighted to take them up on the offer – the only minor issue with this is that, by my estimation, I will need a couple of years to get round everyone…here’s hoping that I can oblige…

Boring health stats update – still feeling good, eating well and burping like a champion. Twinges in the back are (possibly) very slightly more uncomfortable, but are still so slight that it’s hard to tell. The only other “medical” point is that I have to drink more water – how my chums at Highland Spring will chuckle at that…worked there for 14 years and barely touched a drop…oh the irony…

So…meeting with the oncologist has been and gone, and I’m still trying to assimilate the abundance of information that was shared…

Of course, the current data provided is all based on the “average” person, so the degree of relevance to me personally can’t be indicated yet.

Jumping to the numbers in these average terms, if left untreated, I am looking at the region of 6 months – not really what I had hoped to hear. If I have an average response to chemo version 1, it could add a few more months into the mix. If I have a suitable blood profile for chemo version 2, this could add even more.

So the clock has started on the next 2 waiting periods…2 weeks to see which version of chemo is the favoured one, and chemo starting a week after that.

All in all, grateful that there is a treatment option available…I just need to get my waiting strategy sorted…

Yes, the next update was due tomorrow but…

…there has been such a high degree of interest in this since I “launched” it yesterday that I feel that I would be short-changing the folks that have taken the time and effort to read so far.

So, how do I give an update when nothing has happened…? Until I have more facts regarding any potential treatment, I can simply give an idea of how I am feeling at the moment.

Truthfully, I feel like an utter fraud. Apart from (very) minor occasional back pains and a tendency to tire more rapidly than before, the only noticeable effect at the moment is that I feel fairly “full” after eating relatively small amounts of food. This means that I am “grazing” my way through the day rather than sitting down for 3 full meals. That said, it’s still cereal and toast for breakfast (smaller bites and more chewing – not my normal approach to eating…); I still manage a lunch (slightly less than previously) and a fairly normal tea, albeit spread over a longer time. The range of foods I am having have not really changed at all, it’s simply a case of balancing input with capacity over a slightly longer time. Having had a bit of a reputation for rapid intake (youngest sibling syndrome – fastest finished got first shout at second helpings), I suspect I have now slowed down to a more normal intake pattern. I still manage enough of the essential food groups (Pringles, chocolate, wine etc). Currently no problems with swallowing and I have never suffered from heartburn or reflux in my life previously, and that appears to be continuing. The only other gastric point of note is that I do have a tendency to burp…quite a lot, actually. No discomfort for me, just an unpleasant audible soundtrack for those near me. Still, even that could be worse…

So it is Tuesday 18th May 2021. The next appointment is on Thursday 20th and now it is a case of waiting for the next set of facts from the next consultant.

Having never been in this situation before, I am not entirely sure what to expect in terms of what treatment options may be available, but what I can expect is the same assured, professional and empathetic approach that all those we have spoken to in the NHS have shown so far.

If you set aside the shock, disbelief, rage, sadness and feelings of complete uselessness, the over-riding feeling that I have experienced so far is the amount of waiting involved. Don’t get me wrong, the speed of response from the NHS has been incredible and the impression from the outset has been one of travelling on a super-fast track from early investigations to the current scheduled appointment. It is the incremental release of information as each step is taken and a more complete picture is compiled that means you are always waiting for the next piece to be confirmed to be in a position to plan the next steps.

The waiting part is hard.

Whilst the real-time elapsed between the appointments is relatively short, every minute where you allow your mind to contemplate “what’s next?” is a minute of wild imagination veering from utter despair and despondency (“what if I only have weeks left?”) to ridiculous optimism (“maybe they’ll zap it and it’ll be like this for years”). I used to be quite patient and able to kill time waiting for a delayed flight or similar by almost meditating in a calm mental oasis, oblivious to any external noise. (I once almost missed a delayed flight back home from Gatwick by being so zoned-out that I didn’t hear the boarding announcements, despite being awake and sitting by the departure gate…). That patience has abandoned me for the present and I am ever so aware of the slow passage of time to the next step.

Apart from my obvious self-interest in the next steps, the lack of any form of forward plan means that messages and chats with well-wishers are necessarily rather short on detail. The number of supportive messages that I have received has been truly humbling – hence the reason I decided to try this blogging malarkey to allow anyone interested to be kept up to date. Just popping a note on to say “no news, try again later” felt like short-changing anyone who had bothered to tune in, so I am trying to find some kind of “filler” until there is actual information to give. Hopefully the quality of the filler will improve over time…

So there we have it – today’s news is that there is no news. By means of some compensation for the vacuum, I can give some peripheral insights – last night I ate well and slept well; I have been feeling good all morning (currently at work as usual), with only a slight twinge in my back to remind me that things are not 100% good internally.

All in all, not a bad place to be, all things considered…

2 weeks ago, following treatment for the presence of Helicobacter in my gut, I had an ultrasound followed by an endoscopy to inspect the upper digestive tract for any ulceration damage.

The ultrasound showed that my liver was “very uneven”; the endoscopy found a cancerous area at the bottom of my oesophagus. A review of the endoscopy led to a CT scan following which a diagnosis of advanced oesophageal cancer was made. The cancerous area is too large to benefit from surgery and there are secondary cancerous sites mainly on my liver, but also on my spine and lungs.

The next stage will be a meeting with the oncologist (which will take place on Thursday 20th May), where options for treatment (if there are any) will hopefully be discussed.

Currently, apart from occasional twinges in my lower and upper back, and a slightly “full” sensation when I eat, I feel absolutely fine…